School of Social Work and Social Policy, La Trobe University
More than Community Presence: Social Inclusion for People with Intellectual Disability
Proceedings of the Fourth Annual Roundtable on Intellectual Disability Policy
Held on Friday 23 October, 2009
Edited by Christine Bigby and Chris Fyffe ISBN 978 192 1377 853
Published by School of Social Work and Social Policy La Trobe University Bundoora Vic. 3086 Australia
Created by Allardice Group Blackburn Vic. 3130
Bigby, C., & Fyffe, C (2010). More than Community Presence: Social Inclusion for People with Intellectual Disability. Proceedings of the Fourth Annual Roundtable On Intellectual Disability Policy. Bundoora: La Trobe University. More than Community Presence: Social Inclusion for People with Intellectual Disability
Proceedings of the Fourth Annual Roundtable on Intellectual Disability Policy
Held on Friday 23 October, 2009
Edited by Christine Bigby and Chris Fyffe
Fourth Annual Roundtable on Intellectual Disability Policy 1 Contents
Papers More than Community Presence: Social Inclusion for People with Intellectual Disability. Christine Bigby & Chris Fyffe...... 3
A Moment of Change. Jenifer Clegg, University of Nottingham & Nottinghamshire Healthcare NHS Trust...... 12
Inclusion: A Capability Perspective. Paul Ramcharan, RMIT University, Centre for Human Rights...... 19
Problems of De-Differentiated Policies of Social Inclusion: Findings from Two Studies of Institutional Closure in Victoria. Christine Bigby & Tim Clement, La Trobe Unversity...... 30
Making it Real: Participation of People with Intellectual Disability on Government Advisory Boards. Patsy Frawley & Christine Bigby, Latrobe University...... 41
Inclusion: Making it Happen: Key Elements for Disability Organisations to Facilitate Inclusion. Erin Wilson & Elena Jenkin, Deakin University and Scope...... 52
Some Reflections on What Might be Needed to Assist People with Disabilities to be Authentically Included in the Community. Deb Rouget, Personalised Lifestyle Assistance...... 62
Developing Community Participation: an ABI perspective: Janet Stumbo, Tom Worsnop & Cath McNamara. Victorian Coalition of ABI Service Providers (VCASP)...... 72
The Pearl in the Middle. A Case Study of Social Relationships with an Individual with a Severe Intellectual Dissability. Hilary Johnson, Jacinta Douglas, Christine Bigby & Teresa Iacono. La Trobe University...... 79
More Than Just Places – It’s About Connecting People. Daniel Leighton & Ralph Hampson, Jewish Care...... 89
Creating Pathways into the Community: An Evolutionary Journey to Community Inclusion. Wendy Shanks & Carolynne Young, Shepparton Access:...... 96
Posters Strategies to Achieve Community: The Redevelopment of annecto David House. Estelle Fyffe annecto...... 104
Key Moments in the History of Self Advocacy. Reinforce History Group Poster...... 105
2 Fourth Annual Roundtable on Intellectual Disability Policy More than Community about the nature of the task that confronts governments, community service organisations Presence: Social Inclusion and community members and stimulate new ideas for People with Intellectual about the strategies necessary to implement social inclusion policies. This introduction synthesises Disability. the key issues raised by the papers, and the varied perspectives participants contributed to the Christine Bigby & Chris Fyffe small group and plenary discussion. In bringing together these views, the purpose is not to critique The Roundtable on Intellectual Disability Policy is existing policies but to add to knowledge that an annual event convened by the School of Social might inform policy. Work and Social Policy at La Trobe University in More so than in previous years, the value of space collaboration with key stakeholders in disability for discussion and dissent was endorsed. Jennifer policy, practice and program delivery. The Clegg (2010) for example, suggested that despite Roundtable seeks; its multiple dimensions and the complexity of To provide a space for fearless debate, among conceptualizing the meaning of inclusion for interested groups, about policy within both the people with more severe intellectual disability disability and the broader human service sectors dogmatic adherence to particular interpretations for people with intellectual disabilities, with the and accompanying moral judgments were intention of naming issues, clarifying concepts prevalent in some arenas. She proposed the need to and ideas, exploring challenges, articulating rethink some of the very foundational ideas, such solutions and informing practice. as normalisation, that have underpinned policy The theme of the 2009 Roundtable was social implementation for the past 30 years and that by inclusion of people with intellectual disability. stepping outside these frameworks different ways The starting point for discussion was current of thinking may be found. Her paper sparked policies both in Australian and internationally debate about the paradoxes inherent in ideas about that commit governments to ‘take effective and social inclusion and ‘an ordinary life’ for people appropriate measures to facilitate full enjoyment with intellectual disability. Such ideas encapsulate by persons with disabilities of this right [to live a constant tension between regarding people with in the community] and their full inclusion and intellectual disability as the same as everyone participation in the community (United Nations, else but at the same time acknowledging that for 2006, p. 13). Specific policies that envision the visions of inclusion to be put into practice their social inclusion of people with disabilities reflect uniqueness and differences must be recognized the broader Australian social policy agenda that and adjustments made, but in such a manner that is ‘about ensuring every Australian, wherever doesn’t devalue or draw attention to difference and whoever they are, has a chance to develop and obstruct inclusion. As Ramcharan (2010) themselves and participate fully in community suggested the very nature of intellectual disability life’(Commonwealth of Australia, 2009). poses problems for the more standard remedies As in past years commissioned papers, circulated proposed for social exclusion that are based on prior to the Roundtable and posters prepared for models of equal opportunity ‘where merit and the day provided the catalyst for discussion. Four achievement remain seen to be the only rightful overarching questions were posed: arbiters of access to position which inevitably relegate many people with intellectual disabilities • What does inclusion look like for people to the bottom of the ‘merit ladder’. This point with intellectual disability? was reinforced by Clegg’s suggestion that even • What does it take to achieve inclusion? where people with mild intellectual disability • What are the obstacles to making it happen? do experience success on some indicators of social inclusion such as employment or living • What are the priorities for action? independently they continue to experience not This collection of papers adds to debates about rejection but abjection as they are tolerated rather the meaning of social inclusion for people with than accepted by those around them. These points intellectual disability and extends understandings all reinforce the proposition that achieving social about the tensions that arise in translating inclusion entails significant change on the part of policy into practice or programs that influence ‘included’ community members, and will not be people’s everyday experiences. The papers report achieved simply by change on the part of excluded research and program evaluations that illustrate individuals. The question remains how this can possibilities of social inclusion for people with be achieved. This paper considers the reasons for intellectual disabilities as well as the challenges. the ill defined nature of social inclusion and the It is hoped they will generate further reflection consequences of this particularly in respect of
Fourth Annual Roundtable on Intellectual Disability Policy 3 people with more severe intellectual disability. However it was noteworthy that several papers It goes on to explore, the sense from participants from service providers had adopted definitions that the many guises of social relationships that differed from this (Shanks & Young, 2010), lie at the heart of social inclusion for people more focused on processes and the role of staff in with intellectual disability. A brief overview of supporting inclusion. research that demonstrates the imperatives to address the absence of diverse social relationships Difficulties interpreting social inclusion for in the lives of many people with intellectual people with intellectual disability disability is followed by a consideration of the Social inclusion is a multi dimensional concept, multi dimensional strategies to achieve change already being implemented and exemplified in and it is unlikely that all its elements will be some of the papers. Finally consideration is given relevant to all people all the time. As Clegg to where continued leadership of these and new suggests, ‘it depends on the person and the initiatives should lie. context’. Many of the indicators emerging from work in mainstream policy to more clearly define Social Inclusion an Ill Defined Concept social inclusion, such as literacy, educational attainment or employment were perceived as A central theme was a lack of certainty about either not relevant or insufficiently nuanced to the meaning of social inclusion. Also the sense provide guidance to staff working with people that this term is increasingly being used as a with more severe intellectual disabilities. For slogan or rhetorical device for policy romanticism example, whilst literacy or voting are potentially that ‘glosses over significant disabilities and meaningful for a person with mild intellectual social disadvantage’. Repeatedly raised was the disability they have no meaning or significance impact of the ill defined nature of social inclusion to the quality of life of a person with a profound for implementation strategies which obstructs level of intellectual impairment. the translation of policy into programs and practice, and hampers clear description of what The diversity of people with intellectual disability is expected, securing funding or demonstrating and the multiple dimensions of social inclusion outcomes. For example Ramcharan (2010) suggests result in uncertainty and many ‘what if’ questions’ that calls for community inclusion have ‘failed which pose significant obstacles to creating a to be accompanied by definitions of how this coherent narrative of social inclusion for people might be accomplished or guidance or models with intellectual disability. ‘What if’, for example, of community development’. Bigby and Clement the person ‘chooses’ to be lonely and isolated or (2010) highlighted the consequent variable not to leave their home or ‘prefers’ the company interpretations of group home staff, which of other people with intellectual disability, or the commonly meant they understood their task as prevailing attitudes within their local community seeking community presence rather than fostering threatens their emotional or physical well being? social relationships. In situations such as this How can decisions made by a person with little where visionary policy is not underpinned by sub experience of potential choices be acknowledged goals and strategy, it has been suggested that front but also challenged to enable further horizons line staff determine its nature and the aspects that to be explored without exertion of pressure or take precedence (Lipsky, 1980) which can result in control? How can staff or family members avoid both inconsistent application of policy intent and imposing their own values and preferences? unintended consequences. How can a people with more severe intellectual disability who can’t dream or make their own The ill defined nature of social inclusion is choices be engaged in voicing their preferences? replicated in much research in this field. For Such questions are core issues for the entire service example, two recent systematic reviews have system set up to support people with intellectual drawn attention to the absence of the use of disability, and are very different from the issues theoretical or conceptual frameworks in empirical studies of social inclusion or social participation encountered in thinking about inclusion by the of people intellectual disability or those with community in general. challenging behavior (Bigby, 2010; Verdonschot Issues such as these lead to a central dilemma of et al., 2009). One of the most commonly used how to conceptualise frameworks for action that approaches in research has been that adopted by are sufficiently prescriptive to guide relatively Clement and Bigby (2010) which follows O’Brien’s untrained and unprofessional front line staff, but distinction between ‘social presence’ –the use of flexible enough to take account of the ‘what ifs’, facilities or services in the community available to without giving the impression that ‘anything goes’. everyone, and ‘social participation’ – being part of The absence of such conceptual frameworks helps a growing network of relationships that includes to explain the ‘dogma and what are perceived people with and without intellectual disability. as ‘politically correct’ interpretations that can
4 Fourth Annual Roundtable on Intellectual Disability Policy prevail in situations where social inclusion is for uncertainty and possibly foreclosing debate an imperative of planning or service delivery. about dilemmas too quickly could lead to the Clegg (2010) exemplifies the dangers of doggedly current situation where either anything goes or applying normative notions of social inclusion to rigid dogmatic stances are adopted. These ideas young adults with intellectual disability. She says resonated with Clegg’s proposals about the need for example to generate new ways of thinking which include It was evident that the various parties were permission to doubt and pose questions about struggling to identify the ‘right thing to do’ in current practices. The proposition here is that a complex and fraught context, often with little normalisation and associated values have not sound information on which to base predictions enabled thinking to be extended beyond the way it has been already been functionalised which about the likely outcomes and, indeed, with limited means that more complex dilemmas associated confidence that resources would be available to with social inclusion have not been sufficiently support whatever decision was eventually made. considered. For example Ramcharan (2010) As school leaving dates drew closer, creative exposed the different concepts used to think discernment was undermined further by the about social inclusion in the past and suggested rhetorical use of moral polarities that devalued that the capability approach which is founded alternative points of view and pushed some on the humanness of each individual and their contributions outside the realm of the morally unique capabilities of each person rather than acceptable... We found that the ideas shaping some normative benchmark may provide different services, such as adulthood, inclusion, and choice, ways thinking about social inclusion Through the did not map well onto the needs of these young processes of functionalising (ie making practical) people; they also left parents precariously balanced social inclusion, not only will new ideas such as this on a shrinking moral terrain between over- and be explored but the shift can occur from dealing under-protectiveness. with diversity by an ‘anything goes approach’ to Such dogma and accompanying moral judgments more shared interpretations about the application about the meaning of inclusion can mean some of first principles in diverse situations. options are not considered at all and may also A contrary theme was that many of the so called impede co-operative planning or collective new examples of good inclusion practices are attempts to generate solutions about potential not new at all but reflect developments that roles and activities. have stemmed from normalisation over the Clement suggests that Mead’s distinction past 30 years. Some participants pointed to the between ‘cult’ and ‘functional’ values is useful potential dangers that may therefore arise if new in understanding why such difficulties arise in ways of thinking discard learnings from the the application of social inclusion to people’s past. Perhaps it is important to acknowledge that lives; “cult values are idealisations in which real normalisation was an important starting point, life obstacles to what we want to achieve are and its approaches to social inclusion should not ignored” whereas “functionalised values are be regarded as static but developed further rather interpretations of cult values in ordinary, real- than simply discarded. life situations (Stacey cited in Clement 2010). He suggests that considerable effort over 30 years has Social Relationships as a Core been spent transforming normalisation from a Component of Social Inclusion cult to a functional value by thinking through its Social inclusion was perceived as a multi-layered practical application to everyday situations and concept that required action at all levels of then disseminating these viewpoints. For example, society: the individual (micro), organizational and attendance at intensive Passing workshops and community (meso) and structures and government other normalisation training left a lasting legacy (macro) (see figure 1 in Wilson & Jenkin, 2010). Its which is still evident in many group homes that relational nature (the antithesis of social exclusion) equipped workers with the capacity to apply the which was central to the early conceptualisation principles of normalisation to every situation they of inclusion as a phenomena differentiated from are likely to encounter (Clement & Bigby, 2010) . poverty (Bradshaw et al., 2004) occurred again Such processes have not yet occurred for social and again in the papers and discussions. Clegg inclusion which remains an idealisation or cult (2010) suggested that ‘relationships should become value. the building-block of a new approach’ and Rouget A key process to functionalising is the generation that inclusion is ‘what the human race wakes up of conflict and debate through which the paradoxes to everyday. It’s our neighbours, families, schools, and dilemmas that arise in applying values to the associations, friends, businesses and governments’. enormously diverse ‘what if’ situations likely to be However, accepting the centrality of relationships encountered are exposed. Accepting the necessity evoked a focus on the diversity of relationships.
Fourth Annual Roundtable on Intellectual Disability Policy 5 The importance of avoiding a prescriptive checklist and fleeting or more sustained when people share approach to social inclusion, provoked questions a common purpose’. However, Clegg (2010, 2007) for each individual with intellectual disability has suggested the unease that ordinary members about which type of relationships, with whom, of the community can experience when meeting a for what purpose and how to determine whether person with more severe intellectual disability for some were more important than others. the first time are potentially a significant obstacle The tendencies for researchers or advocates to to such encounters or their conviviality. focus on certain types of relationships for people with intellectual disability such as with people Belonging without intellectual disability, rather than others A sense of ‘belonging’, being part of a network types, such as with family, staff, or peers with of others emerged as central to relationships, intellectual disability were challenged. Rather it but mixed views were expressed about the was suggested that relationships with different proposition that the type of group from which people offer very different things and it is the one gained a sense of belonging was unimportant mix and diversity of a person’s relationships (i.e. ‘mainstream’ – including people without that are most important. Perhaps however, the intellectual disability or ‘segregated’ – comprising absence of relationships with people without only people with intellectual disability). Leighton intellectual disability from social networks is and Hampson (2010) used as a negative example, the reason they are accorded more attention. segregated recreational groups created for the In the process however, they may seem to be purposes of respite and driven by funding accorded more value. Care must be taken to avoid imperatives, which emerged too often without full devaluing or diverting attention from other types consideration of whether individualized inclusion of relationships. Ideally each relationship offers a in existing community groups were possible or different value that adds rather than detracts from desirable. Whilst drawing attention to this they the benefits gained from a person’s entire social did not negate the value of such segregated groups network. but suggested potentially greater value could be gained from belonging to a mainstream group The nexus between ‘community’ relationships and of children. Similarly Rouget too suggested that social inclusion was challenged, on the basis that her organization avoided defending segregation the 1960s notion of community, as a place where and congregation, which was also the position people lived, worked, played and had strong of Cocks and Craig (2009). Such views are based social connections, no longer existed. Instead it on the idea that such groups are chosen due to was suggested that although many people may be insufficient experience of other more mainstream alien to their neighbourhood, they could still be possibilities. In contrast, Shanks and Young (2010) connected to a community characterised by ties and Wilson and Campain, (2009) suggest some of to a common interest or group of people rather the time people with intellectual disabilities will than place. Johnson et al., (2010) also questioned make informed choices to spend time in segregated whether relationships necessarily had to occur in groups where they enjoy spending time with public places or be external to the private world of peers. The key question here is whether people are the individual, for those who found such places segregated on the basis of their informed choice difficult to tolerate. Leighton and Hampson (2010) and affiliation with other group members and not highlighted however, the continuing importance simply because others decide for them that they of place to some communities such, such as the have in common the characteristic of intellectual Jewish community in Caulfield, Melbourne. disability. These papers all suggest the need to By describing the valued but more momentary interrogate more deeply how and why segregated interactions between a young woman with groups are developed. severe intellectual disability and communication Hall (2010) demonstrates clearly that two difficulties and members of her network, Johnson types of belonging may coexist, and thus the et al., (2010) drew attention to the less typical forms importance of both mainstream and segregated of relationships and social interactions, which do group membership. He suggests for example not rely on conversation or shared activities but are that members of an arts group for people with nevertheless both meaningful and reciprocal. In a intellectual disability gain a significant sense of similar vein on the importance of departing from self identify from the group but also belonged the typical expectations of social interaction Clegg through their interactions with other groups to alluded to the importance of moments of meeting, the wider arts community. Similar examples are between people with and without intellectual found in self advocacy groups or in sport where disability. In the field of urban planning Fincher ‘special’ teams play a competition alongside the and Iveson (2008) use a similar idea when they talk mainstream teams in the same tournaments. about ‘encounter’s which can be both convivial Stumbo et al., (2010) paper illustrated the emphasis
6 Fourth Annual Roundtable on Intellectual Disability Policy on self help or mutual support groups in services community to more broadly based community for people with brain injury which does not seem development approaches (Ramcharan 2010; Bigby to be valued in a similar manner by services for & Clement, 2010; Wilson & Jenkin, 2010). However people with intellectual disability, perhaps due the papers by Rouget (2010) and Shanks and to the long history of segregation for other less Young (2010) demonstrated that work at the micro benign purposes. level can result in change to organizations that impacts well beyond the particular individuals Ideas about belonging led to suggestions about concerned and leads to broader social change, the evolving processes involved in developing which challenges the suggestion that work with relationships and their changing nature over individuals leaves the ‘community’ unchanged. time. This was raised particularly in respect of A poignant example was given by Shanks and relationships with staff that are often expected to Young (2010) who described funding a school be transitory but may also last in a different guise caretaker to work extra hours to support the when staff move positions. Dutch researchers employment of a young man with intellectual such as Reinders (2010) and Schuengel etc al. disability which not only changed his immediate (2010) have given considerable attention to the social relationships but those of many members importance of care relationships and staff presence of the school community. Conversely Wilson and in interactions. They have resisted the notion that Jenkins demonstrated the interdependent nature paid relationships are unimportant and simply of ‘inclusion work’ at different societal levels, a commodity to be directed by the consumer, whereby the success of individual opportunities recognizing the incongruence of this notion when is likely to be dependent on the social milieu staff are working with people with severe and within which they occur. Using the UK experience profound intellectual disability. Reinders (2010) Ramcharan (2010) illustrated this issue in respect suggests that staff need to draw on both their of hate crime and the use of anti social behaviour tacit knowledge [derived from a deep sense of disorders against people with intellectual knowing the person] and good judgment to disability to illustrate the lack of tolerance of develop relationships. He points to the need to difference that exists in that community. Whilst acknowledge that each staff member will have a Clegg (2010) referred to the experience of people different relationship with the people with whom with mild intellectual disability who are in open they work, thus for example the experience of an employment or mainstream education where they activity will differ when a person is supported are tolerated rather than accepted and may chose by different staff. Their work proposes that core to return to segregated spaces ‘find company in component of delivering care or support must a few refuges oriented towards acceptance and be development of relationships, watching and tolerance: their families, clubs for PWID, churches, coaching this on the part of supervisors. community centres’. Focusing on the centrality of relationships The endorsement that social policies such as introduces the emotional and subjective dimension inclusion are a form of social engineering came to more clearly to ideas about social inclusion that are the fore in these discussions with the suggestion not found in some of the mainstream literature on that building relationships between people with social inclusion. It also highlights the importance and without intellectual disabilities may be of broadening ideas about the forms of reciprocity, attempting to impose something that is outside though it may be important to distinguish the norm as people should be free to choose between this and benefits derived from altruism. relationships and tend to associate with others For example, is the acceptance of help and the who are like themselves. This however raised the existence of a person with intellectual disability importance of others knowing the person well in another person’s life that leads to a sense of enough to step beyond their identity as person enrichment derived from reciprocity or altruism with intellectual disability and find other identities (see for example Grant et al., 1998). that they would be more likely to have in common with community members. Thus attention to Strategies to Build Social Inclusion the processes of individual relationship building Even if relationships are central to social inclusion, requires a depth of knowledge about the person multi-faceted strategies are required that draw on and the social context. Both Rouget (2010) and Johnson et al., (2010) gave provided examples of the an ecological perspective, recognising that barriers time and skills necessary to do this effectively. exist both within the person and externally in their immediate context and/orthe broader social environment. Several papers presented schemas Community development strategies to effect for the different strategies used to build social organisational and system level change inclusion that range from one to one work, providing Attention to the ‘community’ and actions a bridge or link between the individual and the to strengthen its capacity, such as community
Fourth Annual Roundtable on Intellectual Disability Policy 7 education generated considerable discussion. The who live at home and those who live in group poster from annecto, and several papers (Leighton homes was given particular prominence by Rouget & Hampson, 2010; Wilson & Jenkin, 2010) gave (2010). Whilst inclusion work was considered to be detailed case studies of community development central to most organizations, few are specifically strategies at the meso and macro levels. Much of the funded to initiate and sustain broader community discussion focussed on the potential to manipulate development initiatives. Rather Leighton and existing ‘disability’ spaces so they are opened to Hampson (2010) demonstrate the pit falls, such as the general community and avoid the creation whose client is the person who has been enabled of new disability spaces. Suggested too was the to attend a mainstream group, when a different importance of disability organisations reaching approach to achieving outcomes couched in out to mainstream community organizations and service delivery terms is attempted. Whilst the government and highlighting what either they or importance of champions to lead community particular individuals with intellectual disability development or beacons to illuminate pathways to had to exchange and could bring to relationships inclusion was noted, funding for such roles is not and collaborations. Potentially too, the ‘post part to the current service system. Similar issues code’ initiative by annecto is demonstrating how arise with unit cost funding were organisations disability organisations can foster a greater sense of go beyond the particular activity for which they connection among all people who live or regularly are paid in order to achieve the best possible use a particular locality. outcomes for their clients and were noted in It was suggested that social inclusion policies have respect of individualised funding models (Bigby big expectations of the people and organisations & Fyffe, 2009) which fail to take into account in the community but takes little account of developmental costs of supporting options that the composition and perspectives of these. The involve more than an individual. discussions suggested that some communities/ Community development often occurs localities were more welcoming and supportive of serendipitously as part of initiatives by day inclusion than others, dependant on the nature of programs such as Shepparton access (Shanks & that community and the way people with intellectual Young, 2010), small non government organisations disability were situated within it. Variables proposed such as like PLA described by Rouget (2010) were housing design, type of neighborhood/ and large multi program disability organisations locality in terms of its religiosity, density, culture, such as Jewish Care and Scope (Leighton & socio-economic status, ethnicity composition, Hampson, 2010; Wilson & Jenkin, 2010). This diversity or geographic location. For example a posed the question of how the prominence of common assumption is that rural communities inclusion work can be raised across the whole are more inclusive than inner city neighborhoods. disability system rather than operating at the This raises some key questions for research, such level of smaller boutique programs. However, as ‘what are the barriers and opportunities to there was also a strong sense that the in-depth social inclusions in particular communities’ or work undertaken by small organisations with ‘what is it about some communities that generate each individual which varies in intensity over inclusion’. Propositions that some communities time cannot be replicated across whole systems are more welcoming have not been investigated and there may indeed need to be a boutique and little evidence exists about these. Leighton and program in every suburb. A recurring theme Hampson (2010) suggested that State governments however, was that greater likelihood that people had focused community capacity building efforts with more severe intellectual disabilities would on economically and socially disadvantaged be left out of individualised inclusion work or fail neighborhoods which could be interpreted as an to benefit from broader community development implicit assumption that wealthier localities do not work, as they are more likely to be without require effort to build their capacity to be inclusive. individualised funding packages, to live in block Pertinent too is the impact on local communities funded group homes, to have no family or history and opportunities for inclusion of the recent newer of informal relationships and pose complex and style ‘cluster’ accommodation developments, such time intensive challenges for staff to come to know as Glen Eira Road built by Jewish care, which their preferences. The contradictory position that was raised by Vizel at the 2008 roundtable, and some people still occupy by continued residence whether such designs impact differently in local in large institutions demonstrates the capacity of communities from more traditional group homes a forward looking system to leave some people a or individualized housing options. long way behind the leading edge. The question was posed whether the disability system has the Who Leads Inclusion Work capacity to build circles of support for everyone or The centrality of families to building and even to ensure that everyone with an intellectual sustaining social relationships both for people disability has one person who knows them well
8 Fourth Annual Roundtable on Intellectual Disability Policy and is committed to achieving for them an optimal 2007). Using another marker of social inclusion quality of life, in the absence of underpinning Frawley and Bigby (2010) drew attention to the rights or entitlements. significant under-representation of people with A greater focus on supporting the building of intellectual disability in participatory bodies such relationships and other types of inclusion work as Disability Advisory Councils and difficulties will require organisational reform, a reformulation such bodies have in adjusting their modes of of job descriptions, staff training, and supervision operation to support participation. Summing to ensure it becomes core to the mission and up the scope and challenge of implementing day to day delivery of support by organizations. current policies of social inclusion Ramcharan Clegg suggested the role of staff would be central (2010) suggested that before now policies have not and the use of their experiential knowledge of sought to achieve ‘community living, social justice, individuals to forge relationships, interpret and community acceptance and well-being together better represent better people with intellectual as a matter of course for people with intellectual disability to the community. Johnson et al (2010) d i sabi l it ie s’. for example demonstrated the value of research in understanding and then sharing the how and Conclusions why of communication and interaction used by The discussions did not canvas priorities for action a young women. Suggestions were made that although the importance of building relationships existing competence based training is not relevant did occupy a central place. A little time was spent to relational work, and it is difficult for staff to do pondering employment as another dimension of inclusion work if they don’t know the local area social inclusion and why the proportion of people of the people they are supporting. More attention with intellectual disability in the workforce had may also need to be paid to differentiating what declined. Suggested was the importance of not just staff bring to their role, working out for instance disability advocates taking a lead in expanding which staff are best suited to work with particular employment of people with disabilities in large people and communities. organizations, such as government departments and universities. Perhaps most telling was an Imperative for Action on Social Inclusion endorsement of Reinders (2002) view that while a Disability policies over the past 30 years have rights agenda can open doors into communities or succeeded in significantly improving and institutional roles, achieving social inclusion and changing some aspects of people’s lives. But even a sense of belonging for people with intellectual the more recent focus on broader social change disability in the form of individual social in conjunction with the provision of individual connections or civic friendship requires change specialist services has made few inroads into on the part of community members, which cannot aspects of social inclusion such as relationships be mandated. The challenge remains to turn between people with and without intellectual social inclusion from a cult or idealized value to disability. As Clegg (2010) suggested ‘while functional value, so that understandings of how it normalisation has improved the living conditions can be done are embedded in the service system. and situation of people with intellectual disability By doing this the goals of social inclusion for the significantly, it has had no impact on other desired lives of people with intellectual disability will be outcomes such as social relationships’. Several more clearly understood and embraced by the papers highlighted this lack of progress using entirety of the disability system who are tasked the findings from the recent Making Life Good in with a significant part of the responsibility to the Community study, which drew attention to the bring about the social change required to make it distinct social space that people with intellectual a reality. Importantly however, social inclusion is disabilities continue to occupy following a move only one of the determinants of a good quality of from institutions; despite increased participation life, and it must be set within a context of thinking in activities situated in local communities, about maximising a person’s capabilities and the residents in new group homes remain socially good life for people with intellectual disability. disconnected from other community members These Roundtable discussions have helped to with social networks that comprised family explain the nature of the task, why it is so difficult members, paid staff and others with a disability and provided some useful frameworks and case (Clement & Bigby, 2009). Attention was also drawn studies for tackling it. to the similar limited success of person centred planning processes, implemented in the UK as References part of the Valuing People strategies, to effect any Bigby, C. (2010). 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Fourth Annual Roundtable on Intellectual Disability Policy 9 Bigby, C., & Clement, T. (2010). Social inclusion of Fyffe. More than Community Presence: Social people with more severe intellectual disability relocated Inclusion for People with Intellectual Disability. to the community between 1999-2009: Problems of Proceedings of the Fourth Annual Roundtable on dedifferentiated policy? In C. Bigby & C. Fyffe. More Intellectual Disability Policy. Melbourne: School than Community Presence: Social Inclusion for of Social Work and Social Policy People with Intellectual Disability. Proceedings Grant, G., Ramcharan, P., McGrath, M., Nolan, of the Fourth Annual Roundtable on Intellectual M., & Keady, J. (1998). Rewards and gratifications Disability Policy. Melbourne: School of Social among family caregivers; towards a refined model Work and Social Policy of caring and coping. Journal of Intellectual Disability Bigby, C., & Fyffe, C. (2009). Proceedings of the Research, 42(part one), 58-71. 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Street level bureaucracy: Dilemmas Applied Research in Intellectual Disabilities, 22(3), of the individual in public services. New York: Russell 264-275. Sage Foundation. Clement, T., & Bigby, C. (2010). Group Homes Ramcharan, P. (2010). Capability and Inclusion. In C. for People with Intellectual Disabilities: Encouraging Bigby & C. Fyffe. More than Community Presence: Inclusion and Participation. London: Jessica Kingsley Social Inclusion for People with Intellectual Publishers. Disability. Proceedings of the Fourth Annual Commonwealth of Australia (2009). The Australian Roundtable on Intellectual Disability Policy. Public service policy design and delivery toolkit. Melbourne: School of Social Work and Social Canberra: Social Inclusion Unit, Department of Policy Prime Minister and Cabinet Reinders, H. (2010). The importance of tacit Craig, K., & Cocks, E. (2009). The journey towards knowledge in practices of care. 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10 Fourth Annual Roundtable on Intellectual Disability Policy & C. Fyffe. More than Community Presence: Social Verdonschot, M. M. L., de Witte, L. P., Reichrath, Inclusion for People with Intellectual Disability. E., Buntinx, W. H. E., & Curfs, L. M. G. (2009). Proceedings of the Fourth Annual Roundtable on Community participation of people with an Intellectual Disability Policy. Melbourne: School intellectual disability: a review of empirical of Social Work and Social Policy findings. Journal of Intellectual Disability Research, Schuengel, C., Kef, S., Damen, S., & Worm, M. 53(4), 303-318. (2010). ‘People who need people’: attachment Wilson, E., & Campain, R. (2009). Problem solving, and professional caregiving. Journal of Intellectual people skills and personalised arrangements. Early Disability Research, 54(s1), 38-47. results of research into individualised approaches Shanks, W., & Young, C. (2010). Shepparton Access: for young adults receiving ‘Futures’ funding at Creating Pathways into the Community. An evolutionary Scope. In C. Bigby & C. Fyffe (Eds.), Proceedings of journey to community inclusion. In C. Bigby & C. the Third Annual Roundtable on Intellectual Disability Fyffe. More than Community Presence: Social policy: Achieving their Own Lives: The Implementation Inclusion for People with Intellectual Disability. of Individualised Funding for People with Intellectual Proceedings of the Fourth Annual Roundtable on Disability. Melbourne: School of Social work and Intellectual Disability Policy. Melbourne: School Social Policy, LaTrobe University of Social Work and Social Policy Wilson, E., & Jenkin, E. (2010). Organising inclusion Stumbo, J., Worsnop, T., & McNamara, C. (2009, work: key factors for success. In C. Bigby & C. 23 October). Developing Community Participation: Fyffe. More than Community Presence: Social an ABI perspective. In C. Bigby & C. Fyffe. More Inclusion for People with Intellectual Disability. than Community Presence: Social Inclusion for Proceedings of the Fourth Annual Roundtable on People with Intellectual Disability. Proceedings Intellectual Disability Policy. Melbourne: School of the Fourth Annual Roundtable on Intellectual of Social Work and Social Policy. Disability Policy. Melbourne: School of Social Work and Social Policy United Nations (2006). Convention on the Rights of Persons with a Disability. Retrieved August 20, 2007, from www.un.org/disabilities
Fourth Annual Roundtable on Intellectual Disability Policy 11 A Moment of Change imperfectly understood. Challenging behaviours resulting from combinations of disabilities and Jennifer Clegg environmental stressors can make it difficult to build, or threaten the continuation of, vital relationships. Preamble In this paper I argue that we are at a moment of Over the last few years I have been involved in change, then make and justify the proposal that two projects that inform this paper. The first is relationships should become the building-block a longitudinal research study with a cohort of of a new approach which could emerge from this school-leavers carried out with Elizabeth Murphy, moment of change. I do so by drawing on the Kathryn Almack, and more recently Alison Pilnick. following evidence, argument and examples. Our analysis explores ways that the duress of transition reveals conceptual tensions embedded 1. Recent research questioning the status quo within policies shaped by normalisation, and in ID contributes to the growing view that how these affect different parties. The other is we, and possibly society, are at a moment of an evolving reconsideration of the way specialist change. In this section I focus primarily on services should be designed for people with ID UK research since it may be somewhat less mental health problems, carried out with Richard well known in Australia, but this view is not Lansdall-Welfare and more recently John Ballatt. I restricted to the UK. am indebted to each of these individuals for some 2. New international perspectives on ID that exhilarating conversations, and to members of could reinvigorate inquiry were explored at clinical-academic networks in Nottingham and a multi-disciplinary seminar ‘Counterpoint’ Glasgow who have provided such responsive held in Nottingham earlier this year: they are sounding-boards. I can no longer be sure who first crystallised what idea, so draw on ideas and summarised. publications from both projects. Responsibility 3. Addressing two particular issues which I for the way these are deployed to address the draw from this research: roundtable’s interest in participation, and for the a. The social isolation experienced by concluding implications, lies with me. significant numbers of people with ID; Introduction b. The judgemental ‘moral order’ which inhibits the decisions and actions of staff Despite the centrality of ‘autonomy’ to neoliberal and parents/carers. cultures, people with ID – like everyone else – need to live in relationships. They require help to 4. Continuing to occupy the conceptual manage their daily lives and to express themselves landscape that ID as a discipline has inhabited through various roles and activities, but they also for the last 35 years will prevent us from want and need acceptance, concern, warmth, addressing either of these issues, because understanding and companionship. With such they are fundamental components of that relationships in place, daily life becomes more landscape. There are good reasons why ID possible for all of us. Without them life can become tends to be an isolationist discipline, but this seriously impoverished: health and well-being is the moment to look beyond our protecting may deteriorate, the practicalities of living may veil and find out how new assumptive worlds become problematic and life may get increasingly are created, established and sustained. lonely, frightening and without point. 5. The concluding implications identify some For many people with ID, their disability itself possible directions for acting into this moment is a minor barrier to forming such relationships. of change: they act as an invitation for others Stigma and poverty of opportunity threaten their to step onto this plane of development too. well-being, along with vulnerability to abuse or exploitation. What matters primarily is whether Questioning the Status Quo those around them offer welcome and respect, and have the sensitivity, thoughtfulness, skills As the introductory notes to this roundtable and generosity to form supportive relationships. stated, there is growing research evidence to A mixture of difficulties can stretch the capacity show that while normalisation has improved the of people with ID and those around them to build living conditions and situation of people with ID and sustain enduring, productive relationships. significantly, it has had no impact on other desired Physical and cognitive disabilities may interact with outcomes such as social relationships. This is an health problems and restricted communication; example of recent and in my view significant the implications of neuro-developmental research in the UK which questions the status disorders such as autism or ADHD may be quo.
12 Fourth Annual Roundtable on Intellectual Disability Policy UK research speaking skills to be included (small discussion • Burton, M. & Kagan, C. (2006) Decoding Valuing groups, preparation, buddies): yet the research People. Disability & Society, 21, 299-313 showed that PWID were still unable to speak truth to power. Either they did not speak at all, or • Emerson, E. (2005). Adults with learning they spoke incoherently, or their buddies created difficulties in England 2003/4. Survey report a semblance of discussion by coaching them about downloaded from www.dh.gov.uk/en/ what would be a relevant thing to say. Publicationsandstatistics/DH_4120033 Of course there is also plenty of positive research • Forrester-Jones, R. Carpenter, J. Coolen- in ID which attests to increased quality of life in Schrijner, P. Cambridge, P. Tate, A. Beecham, J. much better physical environments, and much Hallam, A. Knapp, & M. Wooff, D. (2006). The more choice within the domestic setting. The social networks of people with ID living in the current policy agenda has improved things community 12 years after resettlement from for people with ID and their families. These long-stay hospitals. Journal Applied Research in studies highlight what is not working, not least in Intellectual Disabilities, 19, 285-295. initiatives that simply squander limited resource. • Hallam, A. Beecham, J. Knapp, M. Carpenter, None of this will change if policy goals remain J. Cambridge ,P. Forrester-Jones, R. Tate, A. the same. Coolen-Schrijner, P. & Wooff, D. (2006) Service use and costs of support 12 years after leaving Transition research hospital. Journal Applied Research in Intellectual • Clegg, J.A. Murphy, E. Almack, K. (in press) Disabilities, 19, 296-308. Transition: A moment of Change. In Learning • Hall, E. (2005) The entangled geographies of Disability across the life-cycle, 2nd edition, G. social exclusion/inclusion for people with Grant, P. Goward, M. Richardson, P. Ramcharan learning disabilities. Health & Place, 11, 107- (eds) Open University Press/McGraw-Hill. 115. • Pilnick, A. Murphy, E. Clegg, J. & Almack, K. • Redley, M. & Weinberg,D. (2007) Learning (in press but available online). Questioning disability and the limits of liberal citizenship: the answer: Questioning style, choice and interactional impediments to political self-determination in interactions with young empowerment. Sociology of Health & Illness, people with Intellectual Disabilities. Sociology 29, 767-786. of Health & Illness These studies span a variety of methods: • Murphy, E. Clegg, J. & Almack, K. (in press). discourse analysis, a national survey, large- Constructing adulthood in discussions about scale health economic analyses of the effects of the futures of young people with moderate- deinstitutionalisation, and qualitative research profound intellectual disabilities. Jnl Applied into current experiences. They identify policy Research in Intellectual Disability, romanticism which glosses over significant • Almack, K. Clegg, J. & Murphy, E. (2009) disabilities and social disadvantage. They Parental negotiations of the moral terrain of document social isolation that is not relieved risk in relation to young people with learning by community placement; and increasing disabilities. Journal of Community and Applied levels of social disengagement 12 years after Social Psychology, 19 (4), 286-299. deinstitutionalisation, associated with a steady reduction in funding. It seems it was not so • Clegg, J. Murphy, E. Almack, & K. Harvey, A. much living in an institution or the community (2008) Tensions around inclusion: reframing that made the difference, as levels of funding. the moral horizon. Jnl Applied Research in They show that those people who have mild Intellectual Disability, 21, 81-94. disabilities and who succeed on ‘inclusion’ criteria In this longitudinal cohort study most (21/28) of (mainstreaming, independent living and open the young people achieved acceptable placements employment) nevertheless experience not quite but distress was very high for parents. It was rejection, but abjection. They find company in also high for transition staff, half of whom left a few refuges oriented towards acceptance and their jobs during the 18 months of data collection, tolerance: their families, clubs for PWID, churches, while the remainder took significant periods community centres. Finally, there is a detailed of sick leave or reported significant stress. The analysis of a ‘parliament’ for PWID. This intended chronic and international nature of transition to bring together public sector decision-makers and difficulties suggests that the problem originates PWID (at vast but uncalculated expense if the time in what people are attempting to do. We found of senior staff were to be costed). The parliament that the ideas shaping services, such as adulthood, was structured according to involvement research inclusion, and choice, did not map well onto the that generally enables people without public needs of these young people; they also left parents
Fourth Annual Roundtable on Intellectual Disability Policy 13 precariously balanced on a shrinking moral terrain • How strange it is that these accounts of the between over- and under-protectiveness. setting don’t seem to give any indication of As well as problems arising from the what really is being engaged in. conceptualisation of service goals, we observed This unexpected observation resonates with how an environment of moral judgement impeded the puzzlement often expressed by members of co-operation or collective attempts to generate society who struggle to understand people with solutions. It was evident that the various parties ID and therefore how clinicians or social care were struggling to identify the ‘right thing to staff work with them. It is a reminder that the do’ in a complex and fraught context, often heterogeneity of ID, and its socially constructed with little sound information on which to base and consequently shifting boundaries, make it a predictions about the likely outcomes and, indeed, very slippery concept. Those inside the ID world with limited confidence that resources would generally feel they know what is done and how to be available to support whatever decision was talk about it to one another, but the ‘it all depends’ eventually made. As school leaving dates drew nature of the explanations (whether or not the closer, creative discernment was undermined person can talk, walk, has challenging behaviour, further by the rhetorical use of moral polarities autism, or any of a number of other possible health that devalued alternative points of view and or social difficulties or circumstances) frustrates pushed some contributions outside the realm of outsiders and probably impedes access to research grants and support for service developments. It the morally acceptable. was a reminder that the way ID is represented is vital, since limited funding inevitably follows Counterpoint from politicians receiving vague messages that This seminar questioned the common belief that they cannot communicate to the electorate. service shortcomings stem from mere failure to Deinstitutionalisation was made possible by public implement normalisation properly. Thirty people outrage at the demeaning practices revealed by talked together for 3 days. enquiries into underfunded hospitals. Without a similarly coherent narrative of the present, there is Hosts Nottinghamshire Healthcare NHS a risk that support for people with ID will be cut Trust & University of Nottingham without limit until appalling conditions initiate another round of inquiries. International Australia, Germany, Holland, USA A point that emerged more clearly from this National Birmingham, Cambridge, Cardiff, exercise was confidence in relating to these unique Dundee, Leicester, Oxford, persons. Northumbria, Nottingham, Warwick • On the frontline we’re all doing it, we’re Disciplines Education, ethics, geography, history, all investing ourselves in that person we’re management, nursing, philosophy, working with. politics, psychiatry, psychology, social work • There is one experience where the whole problem of meaning evaporates and it is the Papers are currently being revised for publication experience of joy, the experience of being in a special supplement to the Journal of Intellectual around someone and having this sense of Research next year. This is a summary of the key connectedness. topics or themes: Narrative research involving one of the participants (Wilson, Meininger & Charnock 2009) gives a New ideas need new language more detailed examination of staff accounts about This session was run by Nick Everett, an academic their relationships with people who have ID. specialising in creative writing, who encouraged Counterpoint started a process of thinking about participants to describe their experiences as how to communicate the pleasure of finding a vividly as possible, in order to generate new moment of meeting with the uniqueness of people with ID: it only touched on the possibilities that understandings and terms that might prove useful. flow from this. For example, what effect might Participants who were less involved in services this understanding have if it was experienced by were struck by the vagueness of the resulting people who make policy decisions about policy explanations, posing these questions: and funding? Moreover, since the failure of the • What is the topic of this work? It was described general public to become involved with ID has as very busy, as very hard, as very eager, but been lamented by users (Stewart 2009) and carers nobody could describe what happened: what (Smellie 2009), could professionals use their is the topic, what is the deeper sense of this experiential knowledge to forge better connection work? between the public and people with ID?
14 Fourth Annual Roundtable on Intellectual Disability Policy Who’s the expert? self reliant. Not only can few people with ID How can we move beyond a cacophony of voices achieve this ideal, many of the most able have to streamline slow and meeting-heavy decision- decided they do not wish to do so. making? Perhaps this squandering of human • Gleeson (geography): Periods of intense resource could be the focus of change, the point transition in ID ideology always reflect at which money and time are retrieved and social transformations. Examination of the used to better effect. Yet ID is a heterogeneous two key moments of change in ID, shaped condition where nobody can ever have all the by industrialisation & then post-industrial answers, and so some collective or co-operative deinstitutionalisation, reflect wider points of support will always be necessary. A paper from social transformation. If we are now in a Carlson (philosophy) distinguished two kinds of third moment, it may concern a focus on the authority: moral and epistemic. collective, inter-dependency, & reflection on • Moral authority: how to define the good life, what ‘community’ means. justice, what kinds of claims we make. What if we vary the time-scale? What lessons • Epistemic authority: who makes knowledge claims, produces bodies of knowledge does history teach us? • Toms (History) reviewed Tizard’s Brooklands Carlson’s analysis provides the basis for much experiments 1958: why then? Why Fountain more consideration of this issue, both from a Hospital? In the ‘60’s and ‘70’s it was important conceptual/ethical perspective and from a to emphasise the mutability and humanity of management perspective where recession PWID. 1958 Brooklands approach saw human demands that wasted time be reduced. Many beings as emotional beings. Fountain Hospital services carry out meetings with scant regard for been making a name since the Second World effective process, formulation or outcome. They War as a research centre. Med Dir of Fountains are required to hold them and quality assessed close to communist party, deputy was a if they do so, irrespective of their utility: much communist involved in civil liberties; Tizard of the record is provided by reports written in was a member of the communist party in his advance of the meeting. Requiring services to youth and of a forerunner of the Campaign follow ideal processes, such as person-centred for Nuclear Disarmament. Strongly probable planning, fails to recognise that the knowledge, they had a different theory of society as well discernment and authority of those present, and as a new theory of childhood and therapy. their relationships, are likely to be much more crucial to a satisfactory outcome than a naïve facilitator following a particular set of procedural Concluding plenary session themes: stages. • Deep disenchantment with status quo. • Names of policy documents show we Building relationships constructed people as normal: The Same As A number of papers looked at this complex matter You, Ordinary Life etc. We’ve failed miserably from different perspectives, and it was a matter of to achieve it: Why? The way we’ve constructed celebration that they did not all agree. what we’re trying to do. We need to construct • Reinders (philosophy): questioned the people as human beings, not as citizens and effects of quality assessment on professional not as consumers. practice. He argued that it implies that a • Reached the end of the social model. Wouldn’t particular, personal relationship between staff matter if we had more money and more time and person with ID is inefficient because it is and more resources: we may not be able idiosyncratic: quality assurance seeks to ensure to do better. There’s going to be a time of that the person has the same experience (going necessity. We have to start thinking beyond swimming) whoever takes them. Reinders resourcing, about the very foundations of argued that particular relationships are most what we’re doing. Overnight people with ID important, not general and quality-assured were changed from prisoners of institutions to ones. Such intense relationships draw on tacit consumers: we need to imagine other possible knowledge and good judgement by staff. roles. • Schuengel (psychology): Yet sometimes the • We need to have a different way of respecting quality of interaction between caregivers and the inherent humanity of people with ID: not clients is poor: these are not relationships to just different versions of ourselves because be celebrated. Staff benefit from coaching. they are themselves. • Hall (geography): To be socially included • If things have gone wrong then somebody has requires you to be active, participating, useful, to be to blame and so we all try to make sure
Fourth Annual Roundtable on Intellectual Disability Policy 15 we don’t end up getting blamed. Yet we need and we hope that it will prove possible to move to take a risk: saying we shouldn’t simply into the next moment of change without the be treating people with ID as a version of condemnation which has characterised many normality. There are things that are distinctive of the interactions between staff and staff, and about these people that we need to attune to. staff and families of people with ID. Rather • Yes we can give people with ID a voice, but be than continue to undermine key members of clear about who has the right to give that voice the affective community around people with and who has the expertise to understand. ID, developing ways to talk to each other that maintain rather than destroy relationships would • There’s a need for people to write new ideas, be a very good place to start. new ways of thinking. • We have to remind ourselves to be courageous, Beyond the protecting veil and to create spaces where we can think and Continuing to occupy the conceptual landscape act more radically. that ID as a discipline has inhabited for the last • We should be seeking to build relationships 35 years will prevent us from addressing either between people with ID and other people. of these issues, because they are fundamental • Change requires a new building block. Putting components of that landscape. In 2003 we (Clegg emotional worlds and relationships at the core & Lansdall-Welfare) elaborated an observation of the new direction, and putting research and previously made by Reinders, that the development spaces for developing staff into place, would of meaning and defence against its dissolution is start a different story. a central problem for parents and staff involved in ID. It tends to be an isolationist discipline Two Significant Issues because isolation protects ideas that allow people in difficult circumstances to go on. Nevertheless, The social isolation experienced by significant this is the moment to look beyond our protecting numbers of people with ID veil and find out how new assumptive worlds are There are probably many issues that could be created, established and sustained. covered under this heading but I wish to focus on The constructionist philosophers Deleuze & two. Firstly, the social environments that result in Guattari (1994) argue that the creative act involves people being killed by ‘friends’ who torment them, clearing a plane where new concepts can flourish: or single mothers committing suicide with their “Nothing positive is done, nothing at all, in the children who have ID because they have been domains of either criticism or history, when we unable to obtain protection from long-term abuse are content to brandish ready-made old concepts by community members. This is a problem of like skeletons intended to intimidate any creation” class and poverty, and requires more community ( p83). The dominance of normalisation ideas over action. the past 35 years, combined with support from Second, the individuation of service structures an individualist culture which readily embraces that turned group homes into supported living related concepts such as person-centred planning, tenancies framed by person-centred plans. These makes originality and creativity even more leave the least qualified and experienced staff to difficult. We will need to be vigilant if ‘rubber- work out alone if and how to facilitate relationships band thinking’ is not to pull us back into familiar between residents, and between residents and dimensions and ideas. members of the community, a task at which, not Our concepts should conjure or invite actions surprisingly, most fail. Social relationships need and events that help people with ID and those to be considered a priority, not assumed to be a associated with them to flourish. Deleuze & by-product that will flow from other service goals Guattari (1994) argue that new ideas develop in being achieved. philosophy from paradox. Thus the dilemmas we saw many parents and some transition workers The Judgemental ‘Moral Order’ which struggling with in our research may be the seeds Inhibits the Decisions and Actions of of change. Staff and Parents/Carers The radical architect Zaha Hadid (Schumacher People in our transition study devoted far too 2004) has drawn on Deleuze & Guattari’s (1994) much energy creating a semblance of inclusion, or ideas. Hadid’s buildings aim to exhilarate users, justifying why they chose to use specialist services in order to encourage them towards renewal and or avoided going into community settings. Some creativity. Being in her buildings is experienced as staff expressed surprising degrees of certainty dynamic: at best akin to flying. For her good design about how people ought to live. In 2001 Gleeson originates in identifying and then addressing the & Kearns argued for ‘doubt as a moral virtue’, central problem that the structure must solve, while
16 Fourth Annual Roundtable on Intellectual Disability Policy constantly struggling against clutter. Merging this Such a service should be ideologically neutral starting-point with Deleuze & Guattari’s (1994) about whether those communities of interest use of paradox to initiate creativity identifies the do or do not include other people with ID. following issues for reflection. 4. Professionals will emerge from a rule based 1. Exactly what do services for PWID aim to do? approach to practice and the moral clarity They address intellectual disability but rarely associated with asserting client empowerment increase levels of intellect; perhaps this central as a service goal, because this results in an conundrum was what made it so difficult for underplaying of the constraints that people people involved in ID to describe their work with ID experience, and because it excludes in our creative writing exercise. key members of their affective community 2. People with ID (especially those with mental from the picture. health needs) want and need supportive 5. Services will no longer focus exclusively relationships, but their behaviour elicits from on outcomes but rather describe the whole other people the opposite of what they need. system: what is done, how it is offered and 3. In all residential services and many community how it should be experienced not just by services, direct care staff and parents/carers are users but also by carers and staff. This is potentially significant change agents: but the one possible example, for a specialist mental more professionals treat care staff and parents health service: like pawns or tools of the trade, the more 6. “To provide a calm, purposeful, effective dehumanised the whole service becomes. Assessment & Treatment service that aims to 4. Parents want to share the burden of care but minimise distress and/or disruption resulting many do not trust public services. from mental ill-health or poorly managed neuro-developmental conditions. Conceptual Conclusions: Implications for Practice coherence and purposiveness is established These concluding implications are some ideas of not at the assessment but at the formulation directions that could flow from acting into this stage. Formulations specify what the service moment of change, and an invitation for others believes to be at issue for each person, and to step onto this plane of development too. They the care they need in order to thrive; and the are informed mostly by the transition research: service follows up where necessary in order elaborating the implications of the above (and to keep therapeutic interventions alive and other relevant) paradoxes will take longer to reach so prevent relapse. The service does this in practical implications. ways that reduce rather than increase the social isolation that amplifies many of the 1. Increasing social participation requires that we difficulties encountered by people with ID.” get relationships right for more people with ID as a foundation for them experiencing a 7. The trend towards single-person placements sense of belonging to whatever communities for people with the most challenging make sense to them and those to whom behaviours should be reversed whenever they are connected. Insights from community possible. Both their isolation and their cost psychology www.compsy.org.uk such as how make them problematic. The challenge for to work with the grain of local groups, rather research and practice is to develop new ways than setting up new ones that collapse when to enable those who tend to be managed in funding is withdrawn, may inform this work. isolation to tolerate and occasionally enjoy the company of others. 2. Achieving this requires the development of a more textured understanding of need by 8. Professionals and policy staff and people with juxtaposing awareness of the obdurate reality ID should be encouraged and supported to that ID is a group characterised by significant act into the change: to develop, explore and heterogeneity, alongside continuing resistance examine new ideas and approaches. Doing so to the objectification and infantilisation of any will requires reflection about possible risks for individual. clients or carers, and everybody learning how 3. Specialist mental health services will provide to tolerate and find their way through moral the help that carers and health and social uncertainty. care professionals need to build and sustain Deleuze & Guattari (1994) evaluate new concepts their own relationships with people who not against truth criteria, but by assessing the have ID, and to facilitate the development importance of the events to which its concepts of relationships between each person and summon us. Perhaps an important event might particular communities of interests where emerge from something that has been explored they may experience a sense of belonging. here.
Fourth Annual Roundtable on Intellectual Disability Policy 17 References Smellie, I. (2009). The perspective of a local Mencap Clegg,J.A. & Lansdall-Welfare,R. (2003). Death, Society. Mental Health Review Journal, 14(2), 20-21. disability and dogma. Philosophy, Psychiatry, Stewart, D. S. (2009). Making it happen for everyone: Psychology, 10, 67-79. A reflection on changing services for adults with Deleuze, G. & Guattari, F. (1994) What is Philosophy? learning disabilities. Mental Health Review Journal, (trans G Burchell & H Tomlinson). London: Verso. 14(2), 14-19. Gleeson, B. & Kearns, R. (2001). Remoralising Wilson, N. Meininger, H.P. & Charnock, D. (2009). landscapes of care. Environment and planning D: The agony and the inspiration: Professionals; Society and Space, 19, 61-80. accounts of working with people with learning disabilities. Mental Health Review Journal, 14(2), Schumacher, P. (2004). Digital Hadid: Landscapes in 4-13. motion. Basel: Birkhauser.
18 Fourth Annual Roundtable on Intellectual Disability Policy Capability and Inclusion Reproducing the Characteristics of Communities Paul Ramcharan The plan for a move to community care in the UK was first set out in the Hospital Plan 1961 which A significantly long history has seen people detailed the figures for deinstitutionalization of with intellectual disabilities living or existing people with mental illness. Research publications on the margins of society, their lives self- around that time pointed to the problems of fulfilling prophesies of others’ definitions of ‘inmates’ in such asylums and their unacceptable them. They have been possessed, changelings, living conditions (Goffman, 1959; Barton, 1959). vagrants, village idiots and inmates. Although However, alongside these negative factors agrarian economies might support some people postwar optimism and economic vibrancy was with intellectual disabilities to be economically supplemented by social research pointing to productive, any absence of such paid work or the nature of communities as being far warmer, family will have produced harsh and difficult nurturing and caring environments than lives. Increasingly unable to meet the demands of institutions. heavy labour as industrialization unfolded their lives in the poor houses and then the purpose-built Willmott and Young (1960) seminal study in the institutions were no less inhumane. And whilst East End of London showed how strong reciprocal deinstitutionalization, inclusion and community bonds tied people together and sustained people living have been the approach of contemporary by providing mutual aid. People were found policy in Australia and much of the developed to share child care, to help out regularly with household tasks, to look out for each other world, these too have brought new problems. particularly for those who were more vulnerable Never before, then, have community living, social and dependent upon the support of others. justice, community acceptance and well-being Geographically isolated, such community localities been achieved together as a matter of course for encompassed employment, leisure, spiritual and people with intellectual disabilities. other collectives leading to s significant fabric of In this paper the preoccupation with ‘community social and supportive ties demonstrating warmth, inclusion’ as an end in itself in policy rhetoric a sense of belonging and a system of mutual care is examined and the policy, service-related and and support. In such communities the currency of academic strands contributing assumptions exchange was the recognition that if I rely on you about community and inclusion examined. By today then, at some point, you can rely on me in examining the deinstitutionalization movement the future, i.e. you scratch my back and I’ll scratch from the 1960s in the UK as an example it will be yours. shown how attempts at social engineering have Policy in the years preceeding the Hospital Plan consecutively sought to reproduce: emphasized a community development approach • The characteristics of communities to social work and the provision of care in the community. Reflecting the social research of the • The characteristics of everyday community time however, The Seebohm Report recognized living and normal lives that communities within localities were breaking • A level of personal choice and autonomy akin down as people became more mobile both in to members in the wider community terms of transport and in terms of higher paid • And, more recently and, in prospect, the employment. This meant all the services within application of a common framework of human boundaried community settings were beginning rights for citizens to span different localities. As Seebohm said: It will be argued that the approaches adopted to “Although community has traditionally rested date have produced ‘lifestyle’ changes but are yet upon geographical locality, and this remains to accomplish community living, social justice, an aspect of many communities, today different community acceptance and well-being together. members of a family may belong to different This is true, ipso facto, since we also know that communities of interest as well as the same compared to the general population people with local neighbourhood. The notion of a community disabilities remain disproportionately excluded. implies the existence of a network of reciprocal They are excluded from the everyday housing social relationships, which among other things market, largely from employment, continue to ensure mutual aid and give those who experience have significantly worse health outcomes, are it a sense of well-being.” (Seebohm Report 1968: a focus of threats and exclusion within their 147) communities and have lower scores on nearly all This position assumed that despite the breakdown indicators of life quality when compared to the of locality as community that ‘communities of population at large. interest’ would emerge across localities and,
Fourth Annual Roundtable on Intellectual Disability Policy 19 further, the features of mutual aid, trust and 2. Communities were not found to be warm support would be taken to be present within and supportive and, indeed, the Not-in-my- such dispersed communities of interest. Like back –yard (NIMBY) lobby was large and many pieces of academic work it was easy to significant of voice. Indeed Willmott and find in other research a formula to link these Young’s work had also shown that many, policy pronouncements with models of support. particularly those in the younger adult age- In his influential work on ‘neighbourhoodism’ bracket, were leaving tight-knit communities for example Philip Abrams (see Bulmer 1986) for looser-knit suburban life leading to the hypothesized that forms of care would differ argument that, ‘Community turned out to be dependent upon the personnel involved and on a function of shared adversity, something that what setting the care is provided (Diagram 1). As those who were benefiting from the prosperity such professional care in institutions leads to an of the 1960s chose to escape’, (Chapman, 1999: ‘institutional treatment’ model, but where that 40). Indeed those with mental illness and care is provided by non-specialists it becomes later intellectual disability were perceived an ‘institutional care’ model. In contrast, in by much of the community to be a source the community, professional care will yield a of adversity themselves. And where families ‘community treatment’ model and lay or non- had disposable income sufficient to survive specialist inputs will produce a ‘community care’ independently, mutuality was seen as ‘surplus model – i.e. care by the community. It was easy to to requirements’. link the ideal of community care with a community 3. Moreover, with the emergence of consumer care model and to convince government Ministers society and the assumptions of a materialist that the little that was left to do would be covered philosophy within community life mutual using a community treatment model and a social care’ becomes a ‘good’ over which to barter. In work approach as suggested by both Seebohm this model a person provides care (for example and later in the Barclay Report 1982. after school care or looking after children) to a similar level to the person with whom Diagram 1 – Representation of Abrams Framework for Forms of Care they are sharing tasks (Ramcharan, Whittell and Grant, 1994). As many families in this Personnel study pointed out, the cost to neighbours and Professional’s Non-specialist’s others in the community was too high where additional support was required from them Institution Institutional Institutional care to look after their relative with a disability treatment Setting and the most they could rely upon was ‘help in an emergency’. Furthermore there were Community Community Community care treatment parallel but not interconnected communities where people with disabilities did not share the same transport, daily routine, activities Both Abrams and Seebohm saw the means through and places of work, training and leisure. Their which such community care could be developed paths seldom crossed and no opportunity as being through building neighbourhood groups, structure for mutuality existed. good neighbour schemes, participation in local 4. The nature of what people wanted from voluntary organizations and in developing their communities also began to change at ‘communities of interest’. But the model had this time. A secondary analysis of socializing simply failed to take account of a number of patterns in the U.S. General Household factors which made the vision almost impossible Survey between 1974 and 1996 (Guest and to accomplish: Wierzbicki, 1999) show a slow but continual 1. A significant debate in policy ensued decline in social ties, a small growth in non- around whether community teams should neighbourhood socializing and highest levels be treating people with recognized mental of socializing amongst older people, those illness or preventing mental health problems with children and the most disadvantaged. in the general population (on the assumption Moreover Bridge et al., (2004) in their review that prevention would lower incidence of of neighbouring suggest, ‘Neighbourliness diagnosed mental illness). However it was involves distance and privacy as well as shown that up to a quarter of the population closeness and conviviality’ at any one time had a mental health problem Society had itself therefore begun to change (Goldberg and Huxley, 1980) and treating the significantly and the warmth of the community ‘worried well’ rather than the ‘unworried upon which the (at least the ideals) of policy were unwell’ was rather akin to ‘drinking the sea’. built gave way to the post modern community,
20 Fourth Annual Roundtable on Intellectual Disability Policy consumerism and to the ideals of individualism the development of ‘ordinary’ housing for people and choice as opposed to collectivist and reciprocal. with intellectual disabilities over the next forty In the new communities contracts were short term years. However, by the 1980s social policy was as exchange of good at a point in time requires itself undergoing huge transformation with the immediate contracting rather than a contracting rise of consumerism (Burton and Kagan, 2005). In over the life course. Some of these differences are this model those in receipt of welfare were being set out in Table 1 below. recategorised as individuals in receipt of services with rights as consumers. It was always likely Table 1 – A comparison of elements of the ‘warm’ and the given these developments that in Abrams’ terms a ‘(post)-modern’ community ‘community treatment’ rather than a ‘community The ‘warm’ community The (post)modern care’ model would flourish. Furthermore the community? government had to manage not simply the transfer of people with intellectual disabilities from the Reciprocity on the grounds Reciprocity on the institutions but the transfer of service workers of neighbourliness grounds of equal exchange of service or and professionals to new community teams too. good Individual planning introduced in the 1983 A sense of identity out of A sense of identity and All Wales Strategy was accompanied with the belonging to a mutually belonging only with those exhortation to involve people with intellectual supportive community who share interests disabilities in all aspects of planning, managing Stronger together Stronger together with and implementing services (Felce et al., 1995). and supporting all members those with whom one ‘An Ordinary Life’ (King’s Fund, 1980) advocated a shares an identity based focus on smaller non-institutionalised residential upon personal interest settings, increased employment opportunities Commitment is voluntary Commitment based upon and a focus on developing friendships and and there is a volunteering personal choice and commitment personal gain networks in community settings. In other words there was a move to introduce the characteristics A sacrifice of some privacy – A maintenance of privacy of community life to people with intellectual spontaneity to meeting up – meetings are planned disabilities, i.e. to reproduce the community that others in the population took for granted. Many of the problems of community care for But the services in the community in Wales people with intellectual disabilities were therefore were found to be ‘unplanned, fragmented, poorly less to do with such people and more to do with co-ordinated and without adequate mechanisms to societal change, with evidence that was out-of- involve individuals and their families in decision- date at the point of publication and with the making’, (Felce et al., 1998: 49). experience of people with mental illness who were being discharged for nearly twenty years Indeed, before the resettlement period began for people ‘the function of services in relation to the with intellectual disabilities. community was not spelt out clearly enough. Hence the operationalisation of something as Reproducing Characteristics of Community vague as ‘mobilising community resources’…had Living and Normal Community Lives no ready template…The new tangible services For people with intellectual disabilities in the developed were the clearest manifestation of this UK deinstitutionalization was very slow with activity, though they were often the result of ‘top- early efforts at resettlement managed by health down’ planning processes’, (Felce, 1995: 67). and social services moving people to a varied As with a plethora of subsequent policy since assortment of independent living, hostels, some the AWS the call for community inclusion has smaller group homes and to adult placement or signally failed to be accompanied by definitions of fostering services (Emerson and Ramcharan, in how this might be accomplished nor by guidance press). Many of those resettled early were people documents or models for community development. with ‘mild’ disabilities who continued to use In the absence of these the vacuum has been services provided by the very hospitals from filled with a number of common-sense ideas and which they had come. understandable claims by professionals that they With the emergence of normalization in the 1980s are doing all that they can do. its emphasis on ordinary lives (King’s Fund, The evidence from Wales was clear and 1980) and socially valued roles a number of unequivocal yet never addressed in subsequent pilot schemes involving smaller group living policy. For example segregated Adult Training arrangements (Lowe and de Paiva, 1991)were Centre (the ATSS in Australia) provision saw developed and evaluated setting the scene for only a gradual move to satellite systems and in a
Fourth Annual Roundtable on Intellectual Disability Policy 21 survey eleven years after implementation (Beyer, post war UK policy failed to meet the ideals or Kilsby and Lowe, 1994) over two-thirds of person- expectations of the early days? Firstly there has hours were still spent at the ATCs and of these been a continued focus on changing the individual over half the activities were arts and crafts or rather than the community and, associated with contract work. The contract work itself involved this, a ‘graduation model’ (Taylor, 2001). In the menial work such as packing bags (for example ‘graduation model’ the preoccupation is with with screw and dowels for DIY furniture) for ensuring the person has the skills to ‘graduate’ to which a measly pocket-money rate was paid so as have the right to a new life. This may explain why “not to affect welfare benefit payments” and only more people with ‘mild’ intellectual disabilities 5% per annum of people attending ATCs went were the first to leave the institutions and why on to any form of open employment. Pockets of people with challenging behaviours or complex opportunity in alternative day opportunities and needs have been the last. One can ask in relation open employment were also achieved and for the to the ‘graduation model’ why it is that virtually latter employers estimated integration into the without complaint from government, academics general workforce for over half of these workers or others that people with intellectual disabilities was ‘excellent’ (Beyer, Kilsby and Willson 1995). are in a completely different queue for housing than the rest of society. Why are group homes Even thirty years later Valuing Employment Now acceptable for people with intellectual disabilities (Department of Health, 2009), present policy but not for others? And why don’t we see a queue on employment for people with intellectual of people from the wider community hoping to disabilities estimates that only 10% of people access community residential units (CRUs)? with intellectual disabilities are in paid work. Setting a goal of 45% employment (the same as Once again there is an implicit and yet unspoken ‘other’ disabled people) by 2025 the document assumption that at some point distant people says the present employment rate, ‘…represents with intellectual disabilities will graduate to ‘real’ a waste of talent and opportunity for people housing and ‘real lives’. In this respect Reinders with intellectual disabilities, employers and our (2008) asks, ‘why maintain a hierarchy of (human) wider economy and society’, (Department of being that is premised by the faculties of intellect Health, 2009:11). But there is no additional funding and will? Why not ask how to conceive of our but a proposed organisational solution instead. own common humanity regardless of any state or Even were the policy to succeed there is likely condition…’ (p.53). to be a significant wait in prospect for people It is in making this leap that the issue of ‘capabilities’ with intellectual disabilities wishing to enter (which will be discussed later) enters the debate. the employment market. Moreover, top-down Inclusion is STILL a debate about difference and community treatment models of service provision, not a debate about our common humanity. In a even if seemingly co-ordinated do not necessarily society based on such hierarchy, many people lead to significant change and there are a number with intellectual disabilities never graduate. of reasons for this as we will discuss shortly. Instead they are caught in a lifetime of segregated The experience of residential options also proves services with the ‘promised land’ always that vital instructive. Like employment housing represents step away. an opportunity structure through which the wider The person with an intellectual disability must be benefits of community living were supposed taught and must comply with training on the right to have been accessed and experienced. Small behaviour and right skills before they can move scale group homes dispersed in the community on to real work, ordinary homes, or community are more likely to provide best outcomes for leisure. And this explains why there has been so residents (Emerson et al., 2000), for example: much emphasis on behaviour management and leisure activities have been found to be greater social skills training within services and as a and more varied in smaller community settings research outcome measure. (Mansell, 1994; Golding et al., 2005); larger social The second assumption explaining the difficulties networks have been found in smaller settings as of accomplishing inclusion is associated with compared to the large institutions (Golding et al., the first. Implicit in the graduation model is an 2005; Stancliffe and Keane, 2000); leisure, social ‘equality of opportunity’ model where merit and network and community activities were found to achievement are seen to be the only rightful be greater in group homes than in cluster housing arbiters of access to position and, consequently, (Emerson et al., 2000; Emerson, 2004). Yet when set economic resources. Such equality of opportunity against the expectation of community inclusion gives differential access to resources, and since such changes have been modest of not very small people with intellectual disabilities are nearer to Robertson et al (2001a, b). the bottom of the ‘merit ladder’ their quality of So why has community inclusion under the life is lower. Equality of opportunity therefore
22 Fourth Annual Roundtable on Intellectual Disability Policy produces inequality. That inequality is also carried 2. Bridging to the community – That the citizen through generations. advocate remains in the person’s life may lead The early efforts to create lives displaying similar to some criticisms that the relationship remain characteristics to the spread in the wider population paternalistic and, indeed at worst, potentially have found people with intellectual disabilities at exploitative. An additional strategy makes the ‘tail of the bell curve’, with a collection of the assumption that once a person becomes life circumstances and outcomes in amongst the connected to the community that they can lowest for any group of citizens. Despite best more autonomously make their choices efforts the assumptions of economy and policy around maintaining and developing the social have made a spread of life chances similar to and supportive network. In this ‘bridging others virtually impossible to accomplish. model’ someone employed through an NGO acts as a ‘connector’ or ‘guide’, Having That being said, two further conditions need to be built ‘associational maps’ of the community satisfied to accomplish equality of opportunity. they introduce the person to new places Firstly people should be provided equal access and opportunities, guide the person to new to education and to employment, and society relationships and establish links with valued should take away the obstacles that disable people members of the community before fading out through inaccessibility. This is the position of the (in contrast to citizen advocacy). In fading out social model of disability. The second is the need the person can bridge several people at once and for support to make these accomplishments a move on over time, a more efficient approach reality. Innovative strategies for change in these than in the citizen advocacy model. Both the regards are considered below. bridging and citizen advocacy models share a focus on building trust and in recognizing Innovation and professional support the gifts people bring to their communities. At the edges of most policy there tend to lie a The bridging model in particular believes that smaller number of and more innovative approaches people with intellectual disabilities have not to developing inclusion and a number of these in been included because no-one has asked the the early days of deinstitutionalization came from community in the right way. In this model North America. Four of these strategies with we can see the ideals of diversity and positive particular relevance today were outlined in the regard, non-discrimination and support sufficient seminal publication Making friends: Developing for, but not so cloistering as to prevent, self relationships between people with a disability and other determination and choice, (Amado, 1993). members of the community (Roeher Institute, 1990) The models of simply ‘being there’ are and these are summarised and discussed further important. As Reinders (2008) says, below. Not many people in our society believe that 1. One-to-one or matching – If getting people spending time with an intellectually disabled included starts with a friend in the wider person will contribute to the “quality” of their community then why not start find people lives; therefore it is also true that not many willing to volunteer as such friends? The people would know what it is to be a friend ideas around citizen advocacy, the best known of such a person. This is not necessarily their one-to-one matching strategy were based on fault. Even though disability is claimed to be the manufacture of such exclusive long-term “out of the closet” it is still true that many friendship which over time led to a network people with intellectual disabilities live in of friendship and support which started protected environments. It takes an effort to with but was not exclusive to the citizen reach out and meet them’ (p.7). advocate. Additionally the citizen advocate would support instrumental change for the The being there models have been exemplified person in their life circumstances where they by ethnographic accounts such as those in were unable to speak for themselves. In most the volume by Taylor and colleagues (e.g. countries with citizen advocacy schemes it has Taylor and Bogdan, 1989; Taylor et al., 1987; been found that there are a limited number of Taylor, Bogdan and Lutfiyya, 1995). These people in the community willing to commit to accounts show how the features of everyday such partnerships making recruitment time- human life, the struggles with work, identity, consuming and in some cases very costly and sexuality, membership can play out for people inefficient. Despite this Valuing People (2001) with disabilities in ways little different to the first national English strategy for people others and that ‘being there’ is an essential with intellectual disabilities in a generation prerequisite upon which any form of inclusion specifically funded such advocacy. is based.
Fourth Annual Roundtable on Intellectual Disability Policy 23 3. Community development (with self advocates) with institutions which are public regarding and – The first two approaches share the idea private-regarding; the building of bonds of trust that linking people with other community to repair cleavages, immediacy in response to new members is sufficient and does not require connections; durable, intense and multi-stranded any change in the community other than that networks and social ties through neighbourhoods produced by the presence of people with or new media. The social capital approach is intellectual disabilities. The Roeher Institute yet to feature substantively in disability policy (1990) saw self advocates as playing a central but nevertheless offer the prospect of now well- role in supporting the development of links rehearsed models and procedures. with the community though the self advocacy These models have begun to reflect new values movement itself does not seem to have pursued that challenge the ‘policies for the average person’ this as a major strand of their work. Indeed, approach seen to date. Kenny (2006) suggests some authors suggest that it is limiting to see these values as a set of common commitments to: self advocacy as taking place only in groups powerless people and social justice; citizenship with that name and that, indeed, we should and human rights; collective action; diversity; look at the everyday active involvement of change and involvement in conflict; liberation, people with intellectual disabilities in the open societies and participatory democracy; community and their resilience in producing accessibility of human services programs; and, identities and roles chosen by and constantly reworked by themselves (Goodley, 2005:342). empowerment and self-determination. And, In other words this is about choosing how they indeed, the fourth area identified by the Roeher want to construct their own identity, ‘border- Institute lies in the area around reproducing crossing’ (Peters, 1996) from the disability change through extending personal choice and identity to an ‘included’ identity, rather than autonomy and, as such, falls into the next section one predicated on professionals’ views of of this paper. people, their behaviour and their skills. However, the approaches outlined in this section The right to accessible environments championed are worth considering in terms of filling the gaps in by the disability lobby and social model policy around the nature of community inclusion theorists has empowered community initiatives and about how it might best be accomplished. to make use of a raft of legislation since the 1980s designed to improve accessibility (e.g. Reproducing Personal Choice and Disability Discrimination Acts 1995 and 2005). Autonomy of the Wider Community This recognition of the responsibility of the State Using social networks and circles to build to adapt environments has been supplemented by more technical community development models friends such as the Kansas based community toolbox For many the gap between a person’s choice and (http://ctb.ku.edu) which has significant resources a life that is self-determined relies on additional around: support (O’Brien and Lyle, 1987; Boyle, 2008). At an interpersonal rather than a community level 1. Understanding Community Context (e.g., such friendships are usually between people who assessing community assets and needs) see themselves as equals and they provide several 2. Collaborative Planning (e.g., developing a from amongst a group of human needs such vision, mission, objectives, strategies, and as intimacy, nurturance, reassurance of worth, action plans) guidance as well as reliable assistance leading to 3. Developing Leadership and Enhancing social inclusion (See Bayley, 1997 who draws the Participation (e.g., building relationships, categories from Weiss, 1975). recruiting participants) There are now also a significant number of studies 4. Community Action and Intervention (e.g., which demonstrate that where competence is designing interventions, advocacy) distributed amongst a group that the life quality 5. Evaluating Community Initiatives (e.g., is better (Lunsky and Benson; Odom et al., 2004) program evaluation, documentation of and similar studies are emerging in relation community and systems change) to people with intellectual disabilities. In other words, seeing the individual as the focus of the 6. Promoting and Sustaining the Initiative (e.g., interest in building friendships misses the point social marketing, obtaining grants). that the competences of friendship are located The approach has similarities to the emergent within larger groups and not the person only. literature on social capital which (e.g. Putnam, For example, Nuttall (1998) has shown how by 1998) which sees inclusion as being formed taking the name of a ‘spirit child’ (a deceased through: formal and informal engagement, links and distant relative) newborns (including those
24 Fourth Annual Roundtable on Intellectual Disability Policy with intellectual disabilities) amongst Greenland The Community in Prospect Eskimos create a system of distributed competence The review so far has provided an account in for the child’s welfare which draws distant family which change has occurred around inclusive into the child’s life. Booth and Booth (1998) have education, around day services and supported similarly shown in their study of children with at employment and more fundamentally around least one parent with a intellectual disability that housing but that these have not challenged the better outcomes are produces where competencies architecture of exclusion nor its felt experience by are widely distributed. And if such networks people with intellectual disabilities. The majority do not exists naturally it is possible to develop are still in segregated schools, most, albeit in ‘purposive networks’ (Wenger, 1992) to fill the gap smaller settings, still live with people they do not until they do (without losing sight of the need to choose to live with and a huge majority are not ensure that purposive professional networks are employed and show few signs of becoming so. not an end point but a staging post). The modest successes recounted amount largely to ‘lifestyle’ changes in leisure and friendship In its original conception for example in the patterns. U.S. largely around people with acquired brain injury ‘circles of support’ (Willer et al., 1993) were But even today the community is still as established with a purposive nature, unaccepting of people with intellectual disabilities as it has always been. For example, anti-social “The overriding purpose of these circles is to build behavior orders (ASBOs) empower the community inclusive communities, to enable people with to seek such orders for behaviours people in the disabilities to participate fully in their community, community seen to be of threat. And it appears to contribute their talents, to receive support and that people with intellectual disabilities are much to be accepted as valued community members by more likely to have an ASBO applied than others building onto, or replicating natural networks in in society (Ramcharan, McClimens and Roberts, the community”. (Rowlands, 2002:56). 2006) and that acceptance of difference is still The early work on circles (which are now at the unlikely especially where the community is centre of modern person centered planning) saw empowered to police itself. And this still leaves them as community based. Professionals were not open questions of social justice and well-being seen as the rightful owners nor facilitators and, which are further considered below. indeed, daily active involvement in their everyday As already argued, equal opportunity cannot be lives was seen as an important defining feature achieved where environments, community and leading to claims that professionals have colonized infrastructure are inaccessible or where the level person centered planning and undermined its of support is insufficient to allow competition on community roots. But have the circles of support an equal basis. Talking of those with the most within person centered planning achieved profound disabilities Reinders argues that, community inclusion where other strategies have “Our humanity is an endowment, not an failed? achievement. Therefore the fact that profoundly Latest evidence in equivocal suggesting that disabled humans cannot claim achievement although PCP can lead to benefits in community because of their absence of purposive agency does involvement, contact with family and friends and not affect their humanity in any way” (Reinders, choice, it had little impact on social networks and 2008: p.50). that its benefits varied across different groups In this view there is a necessity for social justice and contexts (Robertson et al., 2007). It might be and distributive justice as outcomes which argued that for those who do benefit from PCP in recognize society’s commitment to producing terms of community inclusion that the benefits are the good life for all citizens independent of about ‘lifestyle’ changes not to the hard structures equality of opportunity. The UK has its own of daily life such as housing or employment status Human Rights Act (see Finnegan and Clarke, for example. 2005) and is, together with Australia, signatory to the UN Convention on the Rights of People with The movement towards choice and self- Disabilities (CRPD). Under various Articles the determination manufacture a glue between the CRPD offers significant mechanisms to protect individualization with diversity and consumerism rights as humans, to produce equality under the with community engagements. But the foundational law, to support participation in the political process relationships that need to withstand the tests and other areas that affect their lives. Rights to of time remain elusive leaving people excluded. freedom of association and movement alongside Are there then, any further prospects to which the right to free speech, freedom of religion inclusive policies and practice might look for the and thought are supplemented by a number of future. This is the focus of the following section. economic, social and cultural rights. Some of these
Fourth Annual Roundtable on Intellectual Disability Policy 25 rights that have a relation to community inclusion to be fully-tested but other arguing from a more are outlined in Box 1 below: fundamental position suggest: “By raising issues of equal rights and social Box 1: Some articles from the UN convention justice advocacy movements have successfully on the rights of people with disabilities altered the course of public policy…But it is important to realise that these have been in the Article 19 domain of citizenship and have left unaffected States Parties to this Convention recognize the the domain of personal intimacy’…Apart from equal right of all persons with disabilities to live the institutional barriers that can be removed by in the community, with choices equal to others, public policy, there are cultural barriers that are and shall take effective and appropriate measures entrenched in people’s hearts and minds. This is to facilitate full enjoyment by persons with the reason why we need to think beyond rights disabilities of this right and their full inclusion and justice” (Reinders, 2008: p. 6). and participation in the community, including by So if human rights are insufficient what other ensuring that: possibilities are in prospect? One approach relates (a) Persons with disabilities have the opportunity to ‘capabilities’ (Nussbaum, 2000; 2006) based to choose their place of residence and where upon the observation that unequal political and and with whom they live on an equal basis social circumstances create inequality for the poor, with others and are not obliged to live in a for women and for people with disabilities. This particular living arrangement; leads not to proposals for the need for equality (b) Persons with disabilities have access to a of outcome, goods and services but instead to i) a range of in-, residential and other community metric for distributive justice and ii) a framework support services, including personal assistance for measuring well-being. In the metric for necessary to support living and inclusion in distributive places a responsibility on the state to the community, and to prevent isolation or ensure that material and institutional resources segregation from the community; are provided to support well-being as defined by the capability of life, health, bodily integrity, (c) Community services and facilities for the imagination and thought, emotions, practical general population are available on an equal reason, affiliation, regard for other species, basis to persons with disabilities and are play and control over one’s own environment responsive to their needs. (Nussbaum, 2007). It is in fulfilling such life needs to the maximum possible that, for Nussbaum, Article 27 the good life is experienced. So the capability States Parties recognize the right of persons with approach does not anchor outcomes against disabilities to work, on an equal basis with others; externally set objectives of state or state policy this includes the right to the opportunity to gain but against personal capabilities themselves. This a living by work freely chosen or accepted in approach would solve, for example, some of the a labour market and work environment that is issues around whether employment should be open, inclusive and accessible to persons with a stated policy and outcome for all people with disabilities. States Parties shall safeguard and disabilities. The approach means it is possible to promote the realization of the right to work commit resources independent of any personal achievement. The problem, however, is whether Article 28 it will ever be politically expedient to commit States Parties recognize the right of persons with resources in this way and whether communities disabilities to an adequate standard of living for can accept and live with such diversity. Table themselves and their families, including adequate 2 outlines some of the key values that have food, clothing and housing, and to the continuous supported inclusion and the relevant support improvement of living conditions, and shall take structures and outcomes. appropriate steps to safeguard and promote the The capabilities approach takes us away from realization of this right without discrimination on the implicit reliance on equality of opportunity the basis of disability. which produces inequality, whilst at the same However, there are detractors some arguing that time distancing itself from the communist and ‘the impact of the Convention on countries that socialist policies of equality which have proved already have disability legislation in place...seems so unpalatable for liberal government in the to be minimal’ (Lecomte & Mercier, 2009, p.66). developed world. In providing an alternative The potential of human rights frameworks and philosophy and a mechanism for how to calculate the application of a human rights-based approach how the good life can best be accomplished along to the fulfillment of rights in everyday life is yet with a level of support required to achieve self
26 Fourth Annual Roundtable on Intellectual Disability Policy determination it provides a way of calculating year history in which the promise of graduation what exactly the State owes its citizens, all of to an included life has been dashed on the rocks them, in supporting them to have better lives. of service dominated models and of a graduation And maybe it is better lives rather than inclusion model, which mimics life but which is not really that we should indeed be pursuing. Capability, for real. then, may have the potential to replace a fifty
Table 2 – Values that support community inclusion, their focus, support structure and outcomes.
Value Focus Support structure Nature of outcome Problems and Issues supporting community inclusion
Normalization/ Change person – Institutional closure Valued means Change the person not SRV replicate what is culturally valued to valued ends community; what is valued by society analogue services leads to valued valued?; Community people; supported treatment not care deinstitutionalisation
Ordinary lives Housing, education, Facilitating access and An ‘opportunity Outcomes limited when work, leisure providing support for structure’ set against the ideal of lives in mainstream supporting everyday inclusion; many options relationships, social remained segregated and networks common to not community-based; the community assumption of graduation; inequality of equality of opportunity
Autonomy and Individual’s hopes, Person centred Trust, love, reciprocity, Evidence from PCP choice dreams, aspirations planning, family a life defined by non- equivocal; lifestyle’ change circles of support, negotiables not inclusion; suits those social networks and with ‘lower support needs professionals disabilities’
Diversity Recognising worth, Simply ‘being there’ Heterogeneity; border- Community attitudes acceptance of and supporting the crossing to included are often negative and difference, positive community to change its identity, recalcitrant to change; regard attitudes by confronting rights and inclusion not it with presence and assured nor protected participation
Community Bridging, bonding, Community initiatives Community Costly; Yet to be fully development accessing, funding tie people into ‘care’, ‘support’ tested; finding a system and social initiatives for communities in and ‘belonging’; of exchange that does not capital inclusion sustainable way: Fading communities of disadvantage out interest;
Human rights Protecting and Human rights-based Equality with citizens Limited evidence for fulfilling rights approach around civil, political, human rights based economic, social and approach to changing cultural rights everyday lives and culture; Rights cannot legislate relationships but can build a supportive structure and address infringements
Human Supporting Focus on self Distributive justice Yet to be tested; political capabilities the acquisition actualisation and and well-being as a will given unknown of resources fulfillment of well-being human funding implications; a to maximise charter for those who see capabilities and disability as limitation potential
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Fourth Annual Roundtable on Intellectual Disability Policy 29 Social Inclusion of People based services was substantial. This suggests that for a significant minority of people, life in with More Severe Intellectual “the community” would appear to be relatively Disability Relocated to indistinguishable, on these measures of outcome at least, from life in hospital” (1996, p.30) the Community between Consistently research also found that although 1999-2009: Problems of people with intellectual disabilities participated in more activities in local communities they Dedifferentiated Policy? remained socially disconnected from other community members and continued to experience Christine Bigby & Tim Clement social networks that often did not include friends or acquaintances without intellectual disability Changing interpretations of intellectual disability (Barber, 1994; Cambridge et al., 2002; Cummins & and resultant social policies were evident Dunt, 1990; Cummins, Polzin, & Theobald, 1990; during the twentieth century. Bradley (1994), for Lord & Pedlar, 1991; Robertson et al., 2001). The example suggested a three stage paradigm shift suggestion by Todd et al., (1990) that people with occurred between the late 1960s and 1990s, which intellectual disabilities lived in ‘a distinct social reconceptualised the rationale for policy and space’ captured their small and highly restricted practice in this field. She suggested the medical social networks that generally comprised other model of understanding intellectual disability people with intellectual disability, close family characterised by institutionalisation, dependence members and paid staff. Such findings supported and segregation was replaced in the mid 1970s the view that if deinstitutionalisation was to be with the developmental model and an era of successful it required more than institutional deinstitutionalisation. This period until the mid closure and specialist services such as group 1990s, which saw the creation of group homes and homes and sheltered workshops. Gallant for other specialised services, furthered the physical example suggested, “the success or failure of integration into the community of people with deinstitutionalisation will rest with our ability, intellectual disabilities. In Victoria for instance, collectively to prepare our communities to accept the development of large institutions was halted persons with intellectual disabilities as valued (Victorian Committee on Mental Retardation) and and contributing members of society” (Gallant, St Nicholas Hospital and other institutions were 1994, p. 33). closed. Between 1976 to 2000 the institutional population of people with intellectual disability fell Bradley saw the third stage of the paradigm shift from 4,439 to 873 whilst the group home program as one of ‘community membership,’ and suggested expanded from zero in 1976 to 1050 in 1996 (Forbes, it was still emerging when she wrote in 1994. It was 1999). Research on the outcomes of institutional marked by “an emphasis on functional supports closure and relocation of people with intellectual to enhance inclusion and quality of life as defined disabilities to the community during this period, by physical as well as social integration” (p.13). As both in Australia and overseas, demonstrated the shift to a dominant paradigm of community the advantages of small group living in terms of membership for people with intellectual disabilities increased quality of life and improvement across continued to evolve, the emphasis on both social a range of lifestyle and adaptive behavioural inclusion and human rights strengthened (see domains (Kim, Larson & Lakin, 2001; Emerson & for example, United Nations Convention on the Hatton, 1996; Young, Sigafoos, Suttie & Ashman, Rights of Persons with Disabilities, 2008, http:// 1998). Positive outcomes were demonstrated for www.un.org/disabilities/; Department of Health, people with severe and complex intellectual 2001; 2009, Department of Human Services, 2002). disabilities as well as those with a mild intellectual Significantly, this trend has pararelled broad social disability. The trends are well summarised by policy directions. For example, Gleeson (2004) Emerson and Hatton who state; suggested Australian social and urban policies in “the move from more to less institutional the 1990s were characterised by ‘the new social environments is associated with improvements yearning: the desire for a secure place in social in material standards of living, increased user networks based on reciprocity, trust and mutual satisfaction, increases in adaptive behaviours, respect’. The Bracks government that came to increased participation in community based power in 2000 in Victoria emphasised community activities and increased contact with family and development designed to combat social exclusion friends… However, the literature also indicates and create greater community cohesion (Victorian that such gains are far from inevitable consequences Government, 2001; 2005). of the move to the community. On all measures Social models of disability were influential in of outcome the variation within community shaping the changes to disability policy and
30 Fourth Annual Roundtable on Intellectual Disability Policy new strategies to achieve social inclusion, by of things as anyone else. As a citizen, you will reconceptualising the nature of disability from a choose the role you play in society alongside other focus on individual impairment to the interaction citizens. Your rights and dignity will be respected between impairment and social processes; “It is and upheld by people around you” (Department not physical, cognitive or sensory impairments of Human Services, 2002, p. 7). that cause disability, but rather the way in which There are potential tensions however between the societies fail to accommodate natural aspects of community membership paradigm and the social difference between people” (Priestley, 2003, p. 13). model of disability which both suggest a collective Disability was conceptualized as the collective approach to dismantling social barriers and the experience of people with impairments, created strong thrusts towards individualised support that by society, and as a form of oppression, similar emanated from neo liberal individualism, welfare to racism and sexism. This theoretical base has reform and a rights perspective. Increasingly, underpinned policy developments during the 1990s the allocation and provision of support is based and 2000’s. Arguing that actions to achieve change on determination of individual need rather than should be directed at social arrangements rather membership of a particular category of impairment. than the individual, social models of disability An outcome of the tension between collective successfully expanded the foci of policy beyond approaches and individualism has been what the specialist to mainstream services, and to the Scandinavians termed the ‘dedifferentiation’ of political economy, built environment, institutional policy : the dismantling of arrangements for specific practices, and culture of society. Nevertheless, as groups of vulnerable people and formulation of well as the removal of disabling barriers, both policies and programs that focus on the community the social model of disability and new policy in general or all people with disabilities rather directions acknowledged the need for individual than just specific groups (Sandvin & Soder, 1996). support, but adopted a human rights perspective This has meant in policy and program terms that to inform its provision. Barnes suggested for people with intellectual disability as a group have example, it is “a way of demonstrating that become less visible, and are regarded instead as everyone, even someone who has no movement ‘individuals’, ‘citizens’ or ‘people with disabilities’. or sensory function…. has the right to a certain Such a shift was evident in Victorian disability standard of living and to be treated with respect” policy during the 1990s, as the Commonwealth State (Barnes, Mercer, & Shakespeare, 1999, p. 31). and Territory Agreements dating from 1992 took a During the period of Bradley’s paradigm shift, dedifferentiated approach, the major planning neo-liberal ideology and public choice theory exercises, such as State Plans shifted focus from gained dominance, driving significant reform people with intellectual disability to all people in welfare systems and the adoption of market with a disability, government administration models as service delivery mechanisms (Baldock reorganised to have an all of disability focus, and & Evers, 1991). Such reforms though originating specific legislation for people with intellectual from a different value position align closely with disability was replaced by a more generic disability the shifting paradigm of disability. As a result legislation. in disability and other sectors, human services Since the early 1990’s disability policy in Victoria have become more focussed on the individualised has been dedifferentiated; applicable to all people delivery of support that fosters independence and with disabilities which necessitates its pitch at a the explicit utilisation of informal relationships high level of generality. Increasingly too funded with family, friends, and community members as programs and other implementation strategies sources of support, through, for example, person- are also dedifferentiated with few targeted at centred planning and circles of support (Bigby & particular groups (though the exceptions are Ozanne, 2001). beginning to emerge, such as development By the beginning of the twenty-first century, of specific plans for people with brain injury the a key aspect of the ‘problem’ of intellectual and autism). Two key policy goals are pursuit disability was that of social exclusion, the failure of individual lifestyles and building inclusive to be included as active participants in the social communities (DHS, 2002). Although notions of and economic life of the community. Policy social inclusion and participation lie at the heart proclaimed that as citizens, irrespective of their of policy, neither their meaning nor specific degree of impairment or appearance, people with indicators are explicit in policy documents. intellectual disabilities along with those with Expected outcomes are vague and unspecific, such other types of impairment had a right to be part as ‘to strengthen the Victorian community so that of the community and the support necessary it is more welcoming and accessible, so that people for participation. For example, the vision of the with a disability can fully and equally participate Victorian State Disability was. “If you have a in the life of the Victorian community (DHS, 2002) disability in 2012 you will be as much a part or advance the inclusion and participation in the
Fourth Annual Roundtable on Intellectual Disability Policy 31 community of persons with a disability (Disability nature of an individual’s social relationships as an Act, 2006). Sub-goals for specific groups have not indicator of social inclusion, two distinct elements been developed and it is hard to glean from policy of social inclusion were defined (Australian Social or program documents a sense of what being Inclusion Board, 2009). The first was ‘community included in the community means for someone presence’, the sharing of ordinary places that with a more severe intellectual disability. This define community life. The frequency that reflects a similar lack of clarity about the meaning people left their home and the nature and type of of social inclusion evident in the broader social activities undertaken outside the home were used policy arena. For example, in his introduction to as the indicators of community presence. The the Social Inclusion Board Report on Indicators of second dimension is ‘community participation’, Inclusion (2009, p vii) Vinson suggests the power which O’Brien (1987) defines as the experience of terms such as inclusion and exclusion come not of being part of a growing network of personal from ‘analytical clarity, which is conspicuously relationships that includes people other than lacking, but from their flexibility’. The proper other clients, paid staff and immediate family. The question he suggests should be ‘what we mean nature of personal social networks such as size, by it’. Seldom however is this question posed or relationships, and frequency of contact were used answered in disability policy documents. as indicators of community participation. A ‘whole of government’ approach also characterises dedifferentiated disability policy in Methods the new paradigm, stemming from the need for Study 1. collective responses to dismantle barriers and adopt The first study was conducted between 1999- 2004, strategies in addition to the provision of disability and had as its focus the group of 55 residents of services. This approach relies on all government KRS who moved to small group homes managed departments, associated quasi government and by non government organisations during non government organisations playing a role in 1999/2000. Twenty seven randomly selected effecting change to social structures and processes residents who were relocated to 9 separate group (Commonwealth of Australia, 2009). homes participated in the study. Three residents died during the course of the study, which means Institutional Closure in a New Paradigm the complete data set is reported for 24 residents. This brief review of the nature of disability policy All residents had been labelled as having an provides the context in which Kew Residential intellectual disability, and had been assessed Services (KRS) was downsized in 1999 and finally before they left the institution as having moderate closed in 2008. It was a very different context from or severe intellectual disability. Their ages ranged the earlier downsizing and institutional closures from 39-68 years. that had occurred in Victoria during the 1980s. These had been part of less ambitious and less Data collection multi-faceted intellectual disability policy, which Four waves of data were collected, the first while had not been embedded in broader social policies residents were still living at KRS, and then 1, 3 and 5 with similar goals of social inclusion. This paper years after they moved. At each wave, a structured discusses the findings from two separate studies interview lasting approximately 2 hours was conducted since 1999 that have explored the social conducted with the unit or house supervisor. The inclusion of residents with more severe intellectual interview schedule consisted of a range of open- disability who have moved out of KRS. The ended questions, standardised outcome measures, studies were both mixed methods and had very and global rating scales on the following domains: similar findings with significant triangulation living situation, general health and well-being, between the qualitative and quantitative data. personal development, community integration, Although some of the data from both studies is and interpersonal relationships. Questions were published in separate papers and reports (Bigby, asked about the resident’s formal and informal 2008; Bigby et al., 2009; Clement & Bigby, 2008a, social networks, including the relationship of 2009) the aim of this paper is to bring together each identified person to the resident, as well as succinctly in one place the data relating to social frequency, location, and nature of the contact. inclusion, to consider tentative explanations for These questions allowed a social network analysis the low levels of resident social inclusion found to be conducted for each resident, based on the and the implications for future policy formulation technique suggested by Tracey and Whittaker and implementation. (1990). Anyone who was perceived to be a friend by either the person or the key informant, who Elements of Social Inclusion lived outside the person’s household, and was not Following O’Brien (1987), but also reflecting paid to have contact with them and was in contact more recent conceptualisations which list the at least once a year was included in a person’s
32 Fourth Annual Roundtable on Intellectual Disability Policy informal social network. Both phone and face- No formal testing of residents was conducted but to-face interactions were categorised as contact. updated assessments undertaken before they left Family members of 20 residents participated in a the institution indicated that 20 of the 26 residents telephone survey conducted 1, 3 and 5 years after in the ethnographic study and 60% of the residents the residents were relocated to the community. in the quantitative study had severe or profound This survey sought information including family intellectual. The age range of residents in the satisfaction with the move to the community, as ethnographic study was from 34 – 64 years and in well as patterns of family contact and interaction the quantitative study residents ages ranged from with the resident before and after the move. 34 – 71 years. A series of in-depth qualitative case studies was undertaken with a purposive sub-sample of 11 Data collection residents from four houses. Each resident was The overarching focus of the ethnographic study visited at least twice while still living in the was resident participation and inclusion in the institution, and then at 4-monthly intervals for community and in their daily lives. Data were the first 12 months after the move, and then after collected primarily through participant observation 3 years in the community, at similar intervals by working shifts alongside staff. In addition the for the following 2 years. During these visits, researchers attended some staff training sessions the researchers were participant observers and before the houses were opened and house staff used a checklist of elements to be observed as a meetings. In three of the five houses staff also guide both to conducting the visits and to writing participated in a half-day sessions, where simple field notes. This checklist included items such ethnographic descriptions of day-to-day life in as: personal appearance, resident’s use of space, the houses were discussed. These contained little social interactions with staff and other residents, of the researchers’ interpretations as the aim was community participation/integration, personal to facilitate discussion with the respective staff autonomy/decision-making, and social networks. teams as a way into cycles of action research. Two hundred and sixteen hours of participant Anaylsis observation were undertaken by three researchers, The quantitative data were analysed using ranging across the five houses from 36 to 59 hours. descriptive and non-parametric statistics with In addition eight interviews were conducted with SPSS (SPSS Inc., 2005). The qualitative data were staff and four with family members. A total analysed thematically, with the assistance of the of 159,196 words of field notes were written. ‘‘code’’, ‘‘search’’, and ‘‘retrieve’’ functions of NVivo Following the period of participant observation software (Qualitative Solutions and Research, action research projects were conducted in three 2007). Data about each resident’s network were of the five houses and field notes compiled of categorised on the basis of composition, frequency these projects. of contact, and function. Two waves of data were collected for the quantitative study, the first prior to the residents Study 2. leaving KRS and the second a year after they Residents relocated to group homes as part of moved. A structured interview with the unit the closure of KRS between 2004-2008 were the manager or house supervisor for each resident focus of the second study. The study had two was used to complete a survey that consisted of main components. The first was an in-depth a range of open-ended questions, standardised ethnographic and action research component outcome measures, and global rating scales. conducted with the 26 residents and the staff Similar instruments and domains were used to groups of 5 newly opened group homes. Houses those that had been employed in study 1. In were purposively selected in an attempt to gain addition, at the second wave of data collection a cross section of relocated residents. The second an open-ended survey with 13 questions sought component of this study was a large survey to the views of house supervisors about the nature gauge the outcomes for 100 residents and views of of social inclusion and participation for each their house supervisors about inclusion one year resident in the study and the particular obstacles after they moved from the institution. A stratified encountered in achieving these outcomes. random sample of KRS residents was selected on the basis of those who would move to dispersed Analysis group homes in the community (offsite) and All field notes were shared and the research team those who would move to group homes on the met regularly to reflect on the data and discuss redeveloped KRS site (on site). As 4 residents died emerging propositions and interpretations. within a year of leaving KRS the complete data set During this early analysis discussion focussed on is only available for 96 residents. questions such as, how was it that the opportunities
Fourth Annual Roundtable on Intellectual Disability Policy 33 that existed for residents to enjoy a good lifestyle a period of a month one resident, Brian went out in small housing were not being fully exploited? 3 times alone with a staff member, twice with How were the low levels of participation and another resident, and the other 4 times with choice to be accounted for? How could the negative 2 or more other residents in addition to staff attitudes towards the goal of building inclusive members. The qualitative data from both studies communities be explained? This led to further suggests that most outings take the form of discussion about the attitudes held by staff that activities to relatively anonymous public places, appeared to inform their practice and eventually such as shopping centres, parks or other bus trip to the proposition that some staff did not appear destinations. For example, in a month Brian went to believe it was feasible to implement the policy once to the hairdresser, bowling, swimming, the visions of choice, inclusion and participation for museum and on a train ride, and shopping 4 times. the people with whom they worked, The nature of these community-based activities The data was further analysed with the above were generally unlikely to lead to the formation proposition in mind. A ‘start-list’ of codes was of new friendships or even acquaintances with developed prior to systematically analysing the other community members. Nevertheless it was data (Miles & Huberman, 1994). McGuires’ (1985) clear that people went out more often, in smaller conceptualisation that attitudes comprise affective, groups, to a greater variety of places than they behavioural and cognitive components was used had done when they lived in the institution. to guide the code development and analysis. The language used by staff about residents and Community Participation policy goals, their comments about residents and Minimal changes occurred to residents’ social their work, and their behaviour towards residents networks during the 5 years for study one and were considered. The data was reread looking for one year for study two since they had left the all examples that illustrated both positive and institution. In both studies there was a slight negative staff attitudes towards goals of choice, reduction in informal social network size, from inclusion, and participation, which were then means of 1.92 and 1.75 people to 1.83 and 1.15 grouped into sub-themes (Denzin & Lincoln, respectively. In study one there was a drop in 2000). The coding, search and retrieval functions the number of residents in contact with family of NVivo (Qualitative Solutions and Research, members whilst in both studies the average 2007) were used to assist the analysis and manage number of family in touch with each resident the large volume of data. declined. In study one 50% of residents had no The quantitative data were analysed using one regarded as a friend other than staff, 25% descriptive and non-parametric statistics with had a friend outside the house, and 13% (3) SPSS (SPSS Inc., 2005). Content analysis was used had a friend without intellectual disability. Such to categorise and then code the open-ended data detailed data is not yet available for study two but from the survey of house supervisors. the initial analysis shows that no new friends or In both studies consent was given on behalf of all acquaintances were reported for residents after the residents with intellectual disability, either by the first twelve months in the community. their formally appointed guardian (if one existed) or otherwise by their next of kin. Both projects Understanding Outcomes received ethical approval from the DHS and La Unclear and doubtful staff expectations Trobe University’s Ethics Committees. As already discussed the key policy documents that guided practice in group homes were fairly Findings and Discussion vague and unspecific about the expected nature Community Presence of social inclusion for people with intellectual Survey data from both studies showed an increase disability. This was not clarified at the several in resident activity in the community. In study one sessions of staff training observed as part of study the mean number of times residents went out into 2 or in any more detailed documents available the community almost doubled from 4.74 to 8.37 to staff such as the practice manual (DHS, 2007). times a week and in study two, the mean number As a result staff did not receive strong clear of times increased from 7.3 to 9.70 which was a messages about the meaning of social inclusion statistically significant increase. The qualitative for the residents they worked with nor were they data in study one showed that in 5 of the 11 given indicators with which to measure success. case study houses notably those with residents Not surprisingly there was little consistency in with more severe intellectual disability outings the way staff and house supervisors in the five were predominantly group-based. Similarly, the houses involved in the qualitative component qualitative data from study two showed a pattern of study two understood social inclusion. They of group outings for residents. For example, over found it hard to differentiate between community
34 Fourth Annual Roundtable on Intellectual Disability Policy presence and participation, and used these Organisational issues and public attitudes terms interchangeably. Most commonly, their A cultural analysis of elements of the organisation interpretation of inclusion referred to residents’ that managed the houses in study two suggested capacity to conform to social norms, visit public that not only was there no consensus among staff facilities, use commercial outlets such as shops about the mission of community inclusion but and restaurants, or participate in social groups some elements obstructed rather than supported established for people with disabilities that staff practices that would support community operated from a base in local communities. participation (Clement & Bigby, 2008a, 2008b). The indication from this qualitative data that An obvious example was the provision to all some staff conceptualised social inclusion as houses of large multi-seater buses, that some staff social activity and presence in the community found difficult to park, and implicitly endorsed was mirrored in the majority of responses by group-outings and sometimes led to ease of the house supervisors of the 96 residents who parking rather than more resident-related issues participated in the open ended survey in study two. dominating choices about activities. It was evident Overwhelmingly, this survey showed supervisors too, that the organisation did not have a strong did not perceive community inclusion to be about culture of supervising or monitoring staff day-to- new relationships, maintaining or developing day practices, and had few mechanisms in place to residents’ social networks to include non disabled enforce its policies about supervision of front line community members. Staff understanding of staff. This was compounded by rostering practices social inclusion aligned with the type of activities that meant house supervisors did not regularly they supported residents to undertake, such as work alongside all staff, which led to an absence of opportunities for house supervisors to exercise shopping and other trips into the community, the various guises of practice leadership (Clement and goes some way towards explaining the low & Bigby, 2007). For much of the time front-line staff proportion of activities (less than 20%), such were left to implement their own understanding as regular attendance at a community group of inclusion in their day-to-day practice, without, or activity associated with a person’s interest coaching, role modelling, monitoring or active which might have led to new acquaintances or supervision. friendships. Staff in the 5 houses in the qualitative part of When staff were confronted with more explicit study two identified significant obstacles to social definitions of community participation in the action participation in the external environment, most research projects in study two, it was apparent notably negative public attitudes towards people that some were sceptical about its feasibility for with intellectual disability. They talked about the residents with whom they worked. Some staff people staring or moving away from residents in saw their residents with severe and profound public places, and the need to educate the general intellectual disability as ‘too different’ from the public about people with intellectual disability. rest of the community to either form relationships These views were not reflected by the respondents with other community members or for these to be in the open-ended survey, although this may have meaningful. Though some staff thought a policy been due to the absence of an explicit definition objective such as community participation might of community participation for staff to comment be a good idea in general, their view was it would on. Respondents to questions in the open-ended not work for the men they worked with. This survey about difficulties of supporting inclusion perception was not confined to direct care staff but or participation referred most commonly to the sometimes also shared by supervisors and the few characteristics of residents and insufficiently of family members involved in the study. A separate staff resources to provide one-to-one support. survey of 144 staff confirmed the hypothesis that emerged from the qualitative data, that whilst staff Possible Problems Stemming from accepted community participation in principle, Dedifferentiated Policy they did not see it as feasible for people with more Despite relocation to the community occurring severe intellectual disability (Bigby, et al., 2009). within a policy context with a much stronger The lack of clarity about the nature of inclusion and emphasis on social inclusion, the outcomes for outcomes sought for residents and the scepticism people with more severe intellectual disability of some staff about possibilities for community in these studies are very similar to those found participation helps to explain too why some house in previous decades when relocation occurred supervisors and staff did not regard it as a within a much narrower policy paradigm of priority and why personal care and household ‘deinstitutionalisation’ – people with intellectual tasks were often given precedence over other disability continue to be present in local types of activities. communities but not participating members.
Fourth Annual Roundtable on Intellectual Disability Policy 35 These findings raise questions about the nature suggests a need for dedifferentiated disability and effectiveness of the current policy. The policy to be supported by strong mid-level policies dedifferentiated disability policy found in Victoria or guidance about the nature of social inclusion lacks clearly specified indicators of outcomes and its applicability to each of the diverse sub- for broad aims such as inclusion. It relies on groups who now fall under the umbrella people dispersed staff to deliver individualised support, with disabilities. Differentiated implementation in for example in group home programs, and strategies are more able to take account of the multiple communities or organisations to become differing pathways and support that may be more inclusive. This type of policy does not required to achieve community participation, and measure well against the conditions that policy reinforce participation as an aim that is equally implementation theories suggest are necessary for applicable to all people with disabilities, not just effective implementation, which include clarity, those who are more able. minimal ambiguity, jurisdiction to achieve goals, At the more micro-level of policy implementation simple workable models, involvement of limited through group home programs, our findings ‘players’ and a clear chain of accountability highlight the need for significant work to achieve (Bridgeman & Davis, 2001; Sabatier & Mazmanian greater organisational coherence, translation of 1979). broad policy aims into much clearer guidance For example Lipsky’s (1980) work on policy for staff backed up by much stronger front-line implementation illustrated the potential for management. How this might occur is discussed ambiguous policies to be diverted from original in detail elsewhere (Clement & Bigby, 2008a, intentions through reinterpretation by street 2009). These findings also raise questions about level bureaucrats; “the routines they [street level the breadth of expectations placed on group home bureaucrats] establish and the devices they invent programs, the consequent multiple roles to be to cope with uncertainties and work pressures, played by staff and diverse skill sets thus required. effectively become the public policies they carry Almost sole responsibility lies with house staff to: out”. This resonates with the findings of our provide day-to-day personal care, monitor health, studies, where in the absence of clear guidance administer finances, manage the household, assess, from policy or supervisors many staff construct formulate and implement short and long-term their own interpretation of social inclusion or plans around issues such as skill development, decide its feasibility selectively, which clearly pursuit of interests, community presence and influences outcomes both sought and achieved for participation, domestic participation, and longer residents. Front-line staff working in organisations term issues such as retirement, provide support without effective supervisory structure left free and nurture relationships between residents and to impose their own (mis) interpretations and families, support residents to exercise choice priorities are shaping the policy aim of inclusion and protect their human rights. House staff are for residents to be one of community presence expected to be housekeepers, attendant carers, rather than both presence and participation. Whilst case managers, social workers, advocates and our findings provide evidence of this occurring community developers. All these are complex roles in group homes, the absence of policy guidance and at times contradictory. Yet most staff have no about inclusion for specific groups indicates the tertiary qualifications. Where demands on staff potential for policy intention to be undermined in time exceed resources and tensions exist between other program areas such as day support. different roles, staff attention is most likely to be The nature of social participation, the support held by those tasks they feel most comfortable required to foster it, and the obstacles likely to be with or that are most immediately obvious if left encountered differ not only with an individual’s undone and will pose most risk in the short term social circumstances and characteristics but more – attendant care, household management and generally by severity and type of impairment. supporting community presence. For some people with a disability, community The question is then how can importance and presence, achieved through provision of time be accorded to community participation for equipment, accessible transport or buildings may residents of group homes, who are increasingly be sufficient to create self-directed opportunities likely to be those with more severe intellectual to pursue interests and interactions that lead to disability, even if a greater consensus is reached community participation. For others, particularly about its meaning and applicability. It seems that those with more severe intellectual disability the group home program is regarded as the sole who will always require paid or informal support strategy to implement community participation to take advantage of opportunities for social for residents rather than being one of multiple interaction, more intensive strategies that stretch strategies as envisaged by the new policy far beyond access or presence may be needed if paradigm. Perhaps, in line with the multifaceted they are to achieve community participation. This community membership paradigm additional
36 Fourth Annual Roundtable on Intellectual Disability Policy strategies to compliment group home programs people with intellectual disability were not found should be devised to develop participation for to have the same clear benefits from disability residents. These may be the type of small scale discrimination legislation as people with physical local programs or voluntary parent run initiatives and sensory disability (Productivity Commission discussed below that are found both in Australia 2004) and very few people with intellectual and overseas that have as their sole mandate the disability are included on national, state or local creation of social relationships for people with advisory committees and when they are, are intellectual disabilities who require significant poorly supported (Frawley, 2008). support. Currently however, such programs There is no reason why more finely grained seldom include residents in group homes or those differentiated approaches, directed at specific without strong family advocacy support. groups should not be used to effect broader social Our findings provide some indication of the change under the umbrella of dedifferentiated likelihood that like staff, some community policy. More targeted strategies, such as community members are sceptical about possibilities of education with the aim of equipping community social participation for people with more severe members with ideas about interacting with people intellectual disabilities. Strategies such as with intellectual disability, or the establishment community development or education are not of community development targets, such as each individualised, and primarily work at the meso local community organisation having at least level, with organisations, communities and local one member with an intellectual disability may institutions. There was no evidence in our studies of be both easier to implement and more successful the impact of these broader policy implementation than broad dedifferentiated strategies that target strategies, such as the metro access program or all people with disabilities. It is remarkable the work of the Office of Disability, that seek to however, that the Victorian Office of Disability, change social structures or processes and make which is responsible for implementing broader local communities more inclusive for people with community development and whole of government disabilities among whom are the residents of initiatives does not see a place for more targeted group homes. It may be that the dedifferentiated or differentiated strategies for different groups of nature of policy and the absence of clarity about people with disabilities (personal communication). specific outcomes is hampering the effective Tensions about differentiation of strategies and implementation of this type of social change clearer specification of goal or sub- goal need to strategy at the local level. For example, Ryan (1999) be identified and debated if policy is to have an suggests that where, as is the case in Victoria, impact on people with more severe intellectual reliance is placed on partnerships with other disabilities. Questions need to be asked about organisations such as local government or clubs all proposed implementation strategies, such as, and sporting associations to implement policy, the how will it improve participation for people with focus should be on ways to measure and monitor intellectual disability? Does it take account of the outcomes, i.e. what actually happens for people, obstacles they may encounter? and if not how can rather than specifying inputs or processes by it be made to do so? which these will be achieved. Similarly, Roger’s (1995) diffusion of innovation theory suggests the Finally these findings about the apparent continuing importance of policy having ‘observability’ – a failure to achieve community participation for clearly expected or measureable outcomes to be people with more severe intellectual disability achieved. As already discussed this is not the case raises the question, posed by one of the senior for disability policy in Victoria. DHS staff during the course of study two. ‘Is it feasible for inclusion to be more than community The as yet unpublished doctorial work of Fiona presence for people with more severe intellectual Reidy (2009) suggests that local governments, disability’? We would argue it is. Support for one of the key partners in broader community this position is demonstrated by the case studies development strategies have struggled with the found in the academic and grey literature which generic nature of disability policy aims, finding recount successful examples of relationships these difficult to operationalise and thus to implement strategies at the local level. There are being developed between ordinary community other indications that broader dedifferentiated members and people with severe intellectual strategies about social inclusion have had little disabilities (Taylor & Bodgan, 1989; Taylor, Bogdan impact on people with intellectual disability. For & Lutfuyya, 1995; O’Brien, & O’Brien, 2002; example, Disability Action Plans now required Planned Individual Networks; Wightman, 2009). under both State and Federal legislation have Such case studies illustrate the work of programs been criticised as being vague and generic based which whilst centred on an individual also involve on stereotypical views of people with disabilities community organisations and other community using wheel-chairs (Goggin & Newell, 2005), members. One approach is deliberate network
Fourth Annual Roundtable on Intellectual Disability Policy 37 building, illustrated by the work of Planned of the person to activities, and seeks out and Lifetime Advocacy Network [PLAN] (www.plan.ca) support natural supports within them. The in Canada, whose work has informed Planned degree to which friendships develop depends on Individual Networks [PIN] (www.pin.org.au) in attentive listening, strategy, persistent support Australia. These are parent run organizations that and sometimes luck. Community builders are risk support the development of a ‘personal network’ takers, creative, and flexible with an ability to take around an individual with a disability. They aim an unbounded approach. to build a web of relationships, not only between Approaches such as this require significant each member and the focus adult but also between investment of time, intensive in the exploratory members, thus developing the network’s collective stage and less so but often continuing in the identity and strength. Individuals are deliberately long- term. The nature of such programs are very and carefully recruited and cultivated to form different from employing a one-to-one support a relationship with the adult. A paid facilitator worker whose role is often simply to support a oversees a three stage establishment process – person to participate in community activities or exploration, development and maintenance. accompany them to community facilities such The facilitator is a person who has knowledge as coffee shops. Descriptions of programs that and connections with the local community and seek to build and support informal relationships compatibility with the person with a disability demonstrate the intensive and lengthy processes and their family rather than a human service involved that requires planning, commitment, professional. The first phase involves an exploration resources and a positive outlook. Although many of the person, their interests, aspirations, capacities, such examples are drawn from small scale initiatives and seeks out possible connections and contacts in often driven by resourceful and committed family the local community. A plan is made for network members, there are also instances where human development which is implemented in the next service programs, such as the recent Connecting phase. Members are recruited by the facilitator, People project conducted by the Foundation goals, strategies and commitment are made for People with Learning Disabilities have and the network fashioned in the development successfully built new social relationships and phase. The final phase is networks maintenance, fostered social participation for people with more where the facilitator supports regular meetings; severe intellectual disabilities (Wightman, 2009). ensuring follow through on commitments and However, building social networks is likely to be a adaptations to change are made. It is estimated low intensity task that stretches over a considerable that initial network formation takes up to 40 period and programs do not easily fit into formal hours of facilitator time over an 8 month period service system requirements like episodes of care. with ongoing support taking about 3 to 4 hours a It is notable however, that common features of month. Keys to this type of network development programs such as these are often a small size and are a vision of what is possible, the willingness to focus on clearly articulated aims. look beyond traditional social service systems and If the aspirations of current disability policy are the ability to ask for support and involvement of going to be realised and more than presence for others. people with more severe intellectual disability Other examples of formal programs that support to be achieved, it may be necessary for disability the formation of relationships take as their starting policy to be more differentiated and as Vinson point regular community presence, and are based suggests spell out much more clearly what is on the premise that participation in community meant by social inclusion, which will support based activities or acquisition of valued social the implementation of more differentiated and roles are the means to individual relationships. An targeted strategies for the very different groups example, of this type of approach is the Community that comprise people with disability. Membership Project in Indiana (Harlan-Simmons, Holtz, Todd & Mooney, 2001; Kultgen, Harlan- References Simmons, & Todd, 2000). This program uses Australian Social Inclusion Board – indicators person- -centred planning techniques to build working group. (2009). A compendium of social up a picture of the person with a disability, their inclusion indicators Canberra: Commonwealth of capacities, interests, aspirations strengths and Australia preferences. A paid ‘community builder’ gets to know the person in a range of different social Barber, J., Copper, B., & Owen, L. (1994). The short-term contexts at the same time exploring the local effects of relocation on the intellectually disabled. community for sites and activities where the Research on Social Work Practice. 4(2), 248-258. person with intellectual disability may play a Bradley, V. (1994). Evolution of a new service valued role or contribute to community life. The paradigm. In Bradley, V., Ashbaugh, J., & Blaney, community builder facilitates the introduction B. (1994). Creating individual supports for people with
38 Fourth Annual Roundtable on Intellectual Disability Policy developmental disabilities: A mandate for change at Cummins, R. A., & Dunt, D. (1990). The many levels (p 11- 32). Baltimore: Brookes. deinstitutionalization of St. Nicholas Hospital: II Baldock, J., & Evers, A. (1991). Innovations and care Lifestyle, community contact and family attitudes. of the elderly: the front line of change for social Australia and New Zealand Journal of Developmental welfare services Ageing International, XV111(1), Disabilities, 16(1), 19-32. 8-21. Cummins, R. A., Polzin, U., & Theobald, T. (1990). Barber, J. G., Cooper, B. K., & Owen, L. (1994). The Deinstitutionalization of St. Nicholas Hospital. short-term effects of relocation on the intellectually IV: A four-year follow-up of resident lifestyle. disabled. Research on Social Work Practice, 4(2), 248- Australia and New Zealand Journal of Developmental 258. Disabilities, 16(4), 305-321. Barnes, C., Mercer, G., & Shakespeare, T. (1999). Department of Health. (2001). Valuing people: A new strategy for learning disability for the 21st Century Exploring disability: A sociological introduction. . Cambridge: Polity Press. London: Department of Health Department of Health. (2009). Valuing People Now: Bigby, C., & Ozanne, E. (2001). Shifts in the model A New Three-year Strategy for People with Learning of service delivery in intellectual disability in Disabilities. London: Department of Health .. Victoria. Journal of Intellectual and Developmental Disability, 26(2), 205-218. Department of Human Services. (2002). Victorian State Disability Plan 2002-2012. Melbourne: Bigby, C. (2008). Known well by no-one: Trends in Disability Services Division. the informal social networks of middle-aged and older people with intellectual disability five years Department of Human Services (2007). Residential after moving to the community. Journal of Intellectual Services Practice Manual. Melbourne: Victorian & Developmental Disability, 33(2), 148-157. Government, Department of Human Services. Bigby, C., Clement, T., Mansell, J., & Beadle-Brown, Denzin, N., & Lincoln, Y. (2000). Introduction: The J. (2009 ) ‘It’s pretty hard with our ones, they discipline and practice of qualitative research. can’t talk, the more able bodied can participate’: In N. Denzin & Y. Lincoln (Eds.), Handbook of Staff attitudes about the applicability of disability qualitative research (2nd ed., pp. 11-28). Thousand policies to people with severe and profound Oaks; CA: Sage. intellectual disabilities. Journal of Intellectual Emerson, E., & Hatton, C. (1996). Disability Research 54, 4, 363-376 Deinstitutionalisation in the UK and Ireland: Bridgman, P., & Davis, G. 2000, The Australian Outcomes for service users. Journal of Intellectual policy handbook (2nd ed.). Allen and Unwin, Crows and Developmental Disabilities, 21(1), 17-37. Nest, NSW. Etmanski, A. (2000). A good life for you and your Cambridge, P., Carpenter, J., Beecham, J., Hallam, relative with a disability. British Columbia: Orwell A., Knapp, M., Forrester-Jones, R., et al. (2002). Cove and Planned Lifetime Advocacy Network. Twelve years on: the long term outcomes and costs Forbes, S. (1999). National and state policy. In of deinstitutionalisation and community care for Ozanne, E., Bigby, C, Forbes, S, Glennen, C, Gordon, people with learning disabilities. Tizard Learning M & Fyffe, C. Reframing opportunities for people with Disability Review, 7(3), 34-42. an intellectual disability (63 -128) Melbourne: School Clement, T.,& Bigby, C. (2007). Making Life Good in of Social Work, University of Melbourne. the Community: The Role of the House Supervisor: A Frawley, P. (2008). Participation in Australian Discussion Paper. Melbourne: Victorian Government Government disability advisory bodies: An intellectual Department of Human Services. disability perspective. Unpublished doctoral Clement, T., & Bigby, C. (2008b). Culture and dissertation. School of Social Work, La Trobe leadership among front line staff. Unpublished University, Melbourne, Victoria, Australia. paper presented at La Trobe Master class on Gallant, D. (1994). Deinstitutionalisation is not intellectual disability. about closing institutions. Entourage, 8(3). Clement, T. & Bigby, C. (2009). Group Homes for People Gleeson, B. (2004). Deprogramming planning: with Intellectual Disabilities Encouraging Inclusion Collaboration and inclusion in new urban and Participation. London, Jessica Kingsley. development. Urban Policy and Research, 22, 3, Clement, T., & Bigby, C. (2008a). Making life good 315-322 in the community: As good as it gets. Victorian Government of Victoria. (2001). Growing Victoria Government Department of Human Services. Together. Melbourne, Office of Premier Commonwealth of Australia. (2009). Social Inclusion Government of Victoria. (2005). A Fairer Victoria. Tool Kit Canberra Commonwealth of Australia Melbourne: Office of Premier
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40 Fourth Annual Roundtable on Intellectual Disability Policy Inclusion in Political and forums, representativeness of membership and the voices heard, and provision of support for Public Life: The Experiences participation. Similar issues have been identified of People with Intellectual in respect of participation in these forums by people with disabilities (Barnes, Newman & Disability on Government Sullivan, 2007; Richardson, 1983; Wolfe, 2002). However, the inclusion of people with intellectual Disability Advisory Bodies disability in participation forums is a relatively in Australia new phenomenon, as until recently they were exempted from the concepts of citizenship and Patsie Frawley & Christine Bigby its associated civic and political participation (Carey, 2003). Rather the view was often held that Marshall (1965) conceptualised citizenship in ‘others’ including parents, carers, advocates or terms of the relationship between community service providers were better placed to represent members and the state. Both he and others since them. Concern was expressed not only about have suggested that a key responsibility of citizens their ability to participate, but the credentials is engagement in civic and political life of the state as people with an intellectual disability and (Wilenski,1986; Wolfe, 2002). As policy change representativeness of those who did (Beresford & over the past two decades has recast people Croft, 1993). This comment from a self advocate with intellectual disability from dependants to sums up the concerns well: citizens, their right to participate in the political The initial objection to us taking part was that we life of the community alongside other citizens hadn’t got the skills. Then we got involved and have been asserted and was identified as one of the spoke up and they said we were unrepresentative. components of full and effective participation and We hadn’t really got learning difficulties. We inclusion in the community set out by the United weren’t typical of disabled people. Or they’d say Nations Declaration of the Rights of People with someone put us up to it! They just couldn’t believe Disabilities (2006). More recently the capacity to we can speak for ourselves. (Beresford & Croft, influence decision makers on issues of community 1993, p. 18) importance has been flagged by the Australian Social Inclusion Board (2009) as an indicator of In the last decade disability advisory bodies have social inclusion. been a key plank used by Australian governments to canvas the views of people with disabilities and In Australia the landmark 1976 report of the Royal involve them in the processes of policy making. For Commission into Government Administration example, the Commonwealth Disability Strategy was instrumental in forging a greater emphasis on (2000) suggested that: citizen participation in policymaking processes through various consultative mechanisms By involving people with disabilities in (Yeatman, 1990). Since then diverse approaches consideration of issues which affect them through have developed to enable participation which inclusion on boards, advisory committees and have not always framed participants as citizens. reference groups. This is an efficient and effective Dalton, Draper, Weeks & Wiseman (1996) for way of ensuring that their needs are met at the example, suggest individuals have also been time that policy is being developed and programs cast as stakeholders, consumers, service users are being planned’. or individuals whose mandate to participate in In a similar vein, the Disability Act (2006) established policy makings stems from individual, political or the Victorian Disability Advisory Council, as community power. Formal ‘participation forums’ a ‘way for people with a disability to have a include variously constituted advisory bodies and say in decision making on whole-of-government reference groups established by different levels policy issues’ (DHS, 2007). Though now more of government, time limited reference groups or formally recognized as citizens and the highest consultation processes constituted around specific users of government funded disability services in issues, regular access to senior policy makers and Australia, people with intellectual disability are submission to Senate or other enquiries. under-represented on disability advisory bodies Since Arnstein’s 1969 commentary, mechanisms at all levels of government (Frawley, 2006). for citizen participation have been extensively Australian disability advisory bodies are mandated critiqued and often regarded as a means to to include all the diverse sub-groups that fall legitimise rather than formulate policy (Arnstein, under the rubric of ‘people with disabilities’, which 1969; Patemen, 1970; Van Til; 1984; Wilenski, is very different from the more differentiated 1986). A significant body of literature, which approach taken in the UK where bodies are cannot be reviewed here, has consistently raised established to seek solely the views of people with four themes; issues of tokenism, power within intellectual disabilities. This difference heightens
Fourth Annual Roundtable on Intellectual Disability Policy 41 the concerns raised by research that people with terms of the meanings people bring to them. intellectual disability in such forums lack of (Denzin & Lincoln, 2000 p.3) This suited the adequate support, have difficulty understanding research aim, which was interested in people’s information and that despite efforts to address experiences of participation and recognised the tangible barriers, they can still feel disempowered importance of understanding these from people’s and incompetent to have a say (Grant, 1997; own perspectives. It drew on both a case method Whittell & Ramcharan, 1998; Simons, 2000; Redley and ethnographic traditions (Creswell, 1998) & Weinberg, 2006). For example a study of the The ethnographic tradition which uses in-depth Parliament for People with Learning Disabilities interviews, observation and document analysis, in Cambridge, found that, ‘though explicitly was chosen as it enabled the researcher to be designed to honor the liberal democratic principles immersed in the micro environment where the of political voice and participation, it seriously experiences were occurring for this group, and faltered in its efforts to realise the principles in to understand the shared meanings of these practice (Redley & Weinberg, 2007, p.29). While experiences through prolonged engagement accessible practices like easy English documents with the research participants (Hammersley and processes that enabled interjection when & Atkinson, 1995). This particular approach to they did not understand were useful these were ethnography is described by Morse and Richards not sufficient to influence the way participants (2002) as a focused ethnographic study. Studies of felt about participating. The failure Redley and this nature aim to, “elicit information on a special Weinberg concluded was due mainly to the topic or shared experience…the topic is specific difficulties people with an intellectual disability and may be identified before the researcher faced “in situ” dealing with the interactions of the commences the study” (p. 53). Stake notes, “case parliament and their feelings of vulnerability in study is not a methodological choice, but a choice these environments. Similarly, Colcannon (2005) of what is to be studied” (cited in Denzin & in a study of participation in service planning Lincoln, 2000, p. 435). Here, the people with an forums found neither the structures nor the intellectual disability and the advisory bodies way they operated gave people with intellectual themselves were studied. Creswell (1989) calls disabilities any power. He echoed the commonly this a ‘bounded system’, a case or cases that are used phrase in relation to inclusion that people bounded by time and place and can be a program, with intellectual disability were present but not an event, an activity, or individuals (p.61). The participating. study was conducted between 2005-2008. All the These UK studies specifically about the inclusion of fieldwork was undertaken by the first author, people with intellectual disability in participatory whilst the second author acted as supervisor and forums suggest a need to address both practical peer debriefer. means of supporting participation and the more intangible social and interactional nature of the Participants environment and the dynamic operating therein, The central participants were the nine people, who so that participants feel confident to participate. in 2005 were the only people with an intellectual No Australia research has either considered the disability who were members of disability advisory perceptions of people with intellectual disabilities bodies in Australia at a national state or Victorian have about their political influence or their local government level. They were members of 6 experiences in participatory forums alongside disability advisory bodies, one national, two state others with different types of disability as well as and 3 local government (some bodies had more those who are non disabled. This study explored than one member with intellectual disability). the political orientations that the small number of Membership of these bodies is in the public members with an intellectual disability bring to domain and participants were directly invited to disability advisory bodies and their experience participate and gave their own informed consent of participating in order to consider the types of after being sent information about the study in support necessary to support their participation. plain English and meeting with the first author to This paper draws on a much larger unpublished go through this material in detail. Four were female doctoral study completed by the first author and the other 5 male and most lived independently. (Frawely, 2008 Though they had all used some form of disability support service in the past, only three used services Method at the time of the study. One person worked full The study used a qualitative methodology, which time in disability supported employment and the takes an interpretive, naturalistic approach to others worked in a range of jobs including in self its subject matter. The qualitative researchers advocacy and self employment. In addition, 12 study things in their natural settings, attempting secondary participants were involved in the study. to make sense of or interpret phenomena in These were people associated with the central
42 Fourth Annual Roundtable on Intellectual Disability Policy participants’ membership of the advisory body, the interviews. Shorter more structured interviews and included support workers, other members were conducted with secondary participants or chairpersons and government employees who which sought information about the support they managed the advisory body secretariats. Table provided to central participants. All interviews 1 sets out the participant’s basic demographic were recorded and transcribed. In addition, at three data and the advisory body of which they were a sites non participant observations of between two member. All names of participants and advisory or three hours were conducted of the proceedings bodies have been changed. of the council meeting or an associated forum or working group. Detailed field notes were written shortly after these observations. The details are Table 1: Participants summarised in Table 2. Central Participants Secondary N. 9 Participants N.12 Table 2: Summary of Data Collection Age Advisory Position Participants Method Number/ Body (Site) duration
Hannah 43 Southern – Support Worker Central In-depth face to 2 to 3 x 2 hours State Advisory body Chair participants. face interviews Manager Advisory Body Secretariat staff, Face to face 18 x 1 hour at 6 Administration chairs and other interviews sites support council members (individual or shared) Andy 50 Southern – As for Hannah State *Support workers Face to face 3 x 2 hours at 2 interviews sites
Jana 50 Central – Support worker Participants at Observation 2 x up to 2 hours National council meetings at 3 sites or other council Karla 40s Northern – Support Worker activities (forums, State Chair person working groups) Advisory body member *Only three sites employed individual support workers. Kieran 40s Seascape – Social Planner In one site this support worker supported two people. Local Advisory body This same support worker also supported a person in a member third site
Martin 21 Hilltown – Disability access Analysis Local worker Chairperson The data about each central participant was collated Advisory body into a chronological narrative about their own member previous experience of self advocacy or other forms of participation, their rationale for involvement Phillip 50s Greentown Disability access and experiences of being a member of the advisory – Local worker body. Included in this narrative too were any Tyler 20s Greentown As for Phillip comments made by secondary participants about – Local their relationship with the central participants and their view on the nature of their participation. Christine 21 Greentown As for Phillip Drawing on the available documents and interview – Local data from central and secondary participants and observations a case study was compiled of each site. This enabled each narrative to be compared Data Collection to the relevant case study site and a comparison Data collection methods included review of key of structures and participation experiences to documents relating to each council such as terms be undertaken. Finally the case studies and the of reference, recent minutes and annual reports central participant’s narratives were analysed where available. Two and in several instances three thematically and conceptual categories developed. in depth interviews were conducted with each After several levels of refinement this led to a central participant. Though largely unstructured series of propositions about factors that mediated an ‘aide memoire’ as suggested by Booth and and supported the participation of participants in Booth (1998) was used to provide a framework for the councils.
Fourth Annual Roundtable on Intellectual Disability Policy 43 Findings and Discussion Table 3: Participants Prior Experience of Political and Civic Engagement Political Orientation As table 3 shows the central participants Experience were experienced activists who prior to their Hannah Self advocacy, reference groups, appointment to the advisory body had participated consultations in consultations with governments or service Andy Self advocacy, service boards, provides as self advocates or service users. consultations Although most had previously strong links to the self advocacy movement, they had been appointed Jana Self advocacy, reference groups, to the advisory bodies as individuals on the basis consultations, self advocacy boards/ committees they an intellectual disability with no mandate to report back or consult with any constituency. Their Karla Self advocacy, intellectual disability appointments had been by invitation though most advisory committee, justice advisory committee, self advocacy board thought this was because they were well known as self advocates. Each person brought with them Kieran Self advocacy board, disability service their own distinct political orientation which was client board reflected in their views about what participation Martin No previous experience meant for both themselves and other people with an intellectual disability. For all participants, Phillip Self advocacy board, disability service committee, Government department participation in the advisory body was not an advisory committee end in itself but a means to achieving personal or political ends. Tyler Self advocacy board, disability service committee Across the group three distinct orientations were identified, democratic, professional and Christine Self advocacy committee communitarian. These are summarized in table 4.
Table 4: Typology of Orientation to Participation
Orientation Goals and Expectations Reference point for participation Identity and notion of participation
Democratic Increased involvement of people Self advocacy Self advocate Participation as a with an intellectual disability in Life experience of a range of right participatory opportunities. people with an intellectual Person with an intellectual A role model to other people with disability gained through self disability an intellectual disability. advocacy. Educate ‘others’ that people with an intellectual disability can participate.
Professional Be recognised as a leader with an Own life experience as a person Questioned application of Participation as a intellectual disability. with an intellectual disability and label of intellectual status symbol Have contact with people in ability to succeed as an individual. disability to themselves. power. Be a spokesperson and to be paid to do this.
Communitarian Raise community awareness, Own life experience and shared Person with a disability – Participation as a change community attitudes, experience of disability. associated with difficulties role for community address social and structural with learning members barriers to community inclusion
Jana, Karla and Kieran had a similar democratic and Give [us] a chance to prove that they are wrong. rights based orientation which was characterized [We] have got the power. If I can do it then by a belief that participation was a right and somebody else can do it. Don’t shove [us] under more people with an intellectual disability should the mat [we] are not roots under the tree. People involved in participatory forums. They saw their with all disabilities can do it. I ve lifted the role as representing and furthering the interests of umbrella open so they can see what people with all people with intellectual disability. an intellectual disability can do. Lift the umbrella
44 Fourth Annual Roundtable on Intellectual Disability Policy up so they can see what is there … Oh this person Phillip, Martin, Tyler and Christine, who were with a disability has got good thoughts and ides all members of local government advisory and brains and opinions … (Kieran 10/5) bodies and with the exception of Phillip much I now want to get involved with people with high younger than the other participants. They had a support needs… you have got to understand communitarian orientation and were interested people with communication needs. It’s about in bringing about change at the local level, to getting the message out. It’s very hard when increase the communities capacity for inclusion the professionals think they know. I am teaching of people with disabilities. They saw this could people about people with an intellectual disability be done by changing attitudes, increasing aware (Karla 02/06) of disability issues and removing barriers to access. They identified as people with a disability I am heavily involved in advocacy… if they see rather than more explicitly as having intellectual we can do it then they can just do it too…. (Jana disability, though recognized they had some 04/06) learning difficulties. They drew primarily on their All three had been young adults when the reform own life experiences of being included in local to disability legislation occurred in Australia in communities but with the exception of Martin the mid 1980’s and had witnessed considerable had all been previously involved in self advocacy change in the lives of people with intellectual groups. disability as institutions closed. They all continued Oh it’s going to improve our community..because to have strong connections to the self advocacy there is so much stuff around her that needs group where they had developed their skills and doing, so we have got to try to improve it, .. In my been involved in campaigns around the closure of opinion it is about time we got the community up institutions. to line ……That’s why I’m involved because I don’t Hanna and Andy, though from a similar want to see the [other people with disabilities] generation to Karla, Jana and Kieran, had a very left out if we are not around they are going to different orientation. They were more focused on be stuffed. Yep trying to get them out in the being a ‘professional’ and modeled themselves community (Christine 08/05) on the non disabled professionals they worked Easier access into buildings as well for people in alongside. They saw their membership as a job wheel chairs. ..(Martin 09/5) and important part of their own self development. Andy for example, equated his appointment on the These findings suggest that people with intellectual advisory body with being employed by the State disability like other community members hold Government. They saw themselves as leaders in different political views which influence what the disability policy networks, who as they were they seek to achieve from participation in civic and now close to power could influence policy as paid political life and the views they will put forward. spokesman for other people with a disability. This demonstrates that it cannot be assumed that They were proud of their success and of being there is ‘an’ intellectual disability perspective that well known, but had severed connections with the members appointed to this category will bring to self advocacy groups where they had gained their advisory bodies. It also suggests perhaps that their skills, and had began to question the application selection and appointment should not be solely of the label intellectual disability to themselves. based on their status as a person with intellectual Their orientation could be considered to reflect the disability but also as with other members on their principles of normalization and the importance political orientation. of socially valued roles to self esteem and social acceptance. Experiences of Participation Before I was known nobody wanted Hanna, Rewarding but Hard Work now that everyone knows that I can do the job Despite their previous experience as activists, everyone wants a piece of me….. It was good just who had contributed to consultations and sat representing myself on the disability advisory on reference groups, participants found their body, not an organisation because I didn’t have to involvement in disability advisory bodies report back (Hanna 09/05&12/06) challenging and at times personally confronting. Well I guess its not my voice, the people who I am Although for most the work was hard, they found speaking up for.. I am speaking up for the whole it rewarding both in terms of what they were able lot and I am taking those issues to the Minister, to achieve but also from a personal perspective in that’s right, I am just wanting to sit around terms of a chance to travel, meet a range of people the table over coffee or over lunch and have an and supplement their income. informal chat.. What can I do for you, what is the I find that what I get out of council is I am problem (Andy 02/06) teaching people about people with an intellectual
Fourth Annual Roundtable on Intellectual Disability Policy 45 disability. And I find that people with other [advisory body] is good because they like to inform disabilities will listen to me. …I think for the people with disabilities what is going on… Some disability council, I think that as a person with information I do [understand] and some I don’t. an intellectual disability being on this council That is why I take [my support worker] with me every person has taken an interest in the issue of and she explains... It is very difficult to get your people with an intellectual disability, or people head around and I feel bored and half the stuff with a disability being in institutions or things that they talk about goes over the top of my head like that…It’s tiring emotionally and physically. and even when [Sandy] has a go with me I still (Karla 02/06) have trouble understanding…. Well it would be …it is hands on, I don’t have to go to [the city], better [if they were in Plain English] then I could I can come here when I want…And I think if understand what I am reading. ….(Jana 02/06) one person sees me on this reference group and [Sandra’s job was] taking notes for me and thinks, hey, what is he doing there I could do that. putting my notes in Plain English, and that was That’s my niche yes and I am not saying to them fine, [she] was good but I never ever got to [have deliberately, I want them to see my involvement, I time to] meet with Sandra. It was always like want them to see my reaction and when they have an hour before the meetings so I was rushed, so seen how much and why, “Come here you” , they if I was having a meeting at 10 I would have to will come on board. (Phillip, 09/06) meet Sandra at 9 so I never really had that time. Because a lot of people thought that because I have Over two days, it’s full on they are very long an intellectual disability that [I] couldn’t keep days, um the first day, Thursday is from nine to everything inside my head for a month …so [we five and the second day if it is in [another city] it had to] do it on the day. (Hannah 02/05). is nine to three because people have to catch their flights to get home, but if it is in [another city] In the early stage it wasn’t easy because I didn’t it is nine to four... On Thursday night after the understand everything on the council and I didn’t meeting we always have a conference dinner... understand what their goals were and what their and we always relax but on the Friday I am glad, philosophy was and what they meant to do and people are glad to get home, they are very tired things like that so I found it really hard in the [laughs]..It is good, I am learning new things, I beginning. And then I got to understand it a bit am understanding… Would it be bad to say [I and then it got easier and easier. When I very first like] the money? (Jana 02/06) started on there and things like that it was very hard for me because I, the things were going too Talking about his involvement Andy said, fast and too quick and I didn’t understand the big “Of course ...it’s not the money it’s the, it’s picture very well even though I did have someone [the] occupation I suppose you would call it”. to explain it to me….My eyes go like this [crosses However, he went on to explain that when he was eyes] I get so frustrated in the meetings, I have to first approached to apply for the position on the leave, it’s pushing my buttons, the system doesn’t advisory body he was not interested because he know what it’s like. This is not about me, it’s did not want to go to more “boring” meetings, about people in institutions. (Karla 02/06) but when he was approached a second time and advised that he would be paid he accepted. Intangible Obstacles and Support Hannah and Andy talked about more intangible Tangible Obstacles difficulties they encountered in participating in Several people felt ill prepared for their role in the business of the advisory bodies and felt were terms of their own education or the expectations dissatisfied with their performance or influence others held about their membership. Most as members. Their feelings were often associated participants talked about the practical difficulties with the way they felt they were perceived by they encountered that stemmed from the way others members or secretariat staff. Hannah the advisory bodies conducted business. Issues for example felt other members did not actively raised were long meeting, the failure to translate engage her in conversations at meetings, that agenda’s minutes and other documents into plain people spoke over her at meetings and recalled English, being adequately briefed on the issues an incident where the Chairperson overlooked to be discussed at meetings. Andy for example, her for an invitation to an event. She was serving felt that he was not as well prepared for meetings a second term and contrasted the way she felt as the other members noting that he had “no regarded within the newly constituted advisory training, no nothing” when he was appointed. body with its predecessor. Other members talked about their difficulties. The new [advisory body] is different because I am learning and sometimes I do understand what there are parents and people who I thought didn’t is going on…yeah because I suppose, because the want me to be there. I just don’t get on with the
46 Fourth Annual Roundtable on Intellectual Disability Policy Chair and it’s like I just feel there are some people understanding information, it was Andy and [there] now that don’t like me and because I am Hannah as the quotes above illustrate that out spoken they don’t like that, they want someone were most dissatisfied with their participation who is going to sit there and not be outspoken experience. They did not feel respected by other and I am not one of those people. I am feeling members and expressed feelings of being less frustrated because I feel I am not being appreciated capable and competent than other members. and they are not using me for the abilities I have In contrast Jana and Karla felt more able to got. (Hannah 04/06) participate and reflected much more positively I had trouble from the start. …She [the secretariat about their experiences, as did the members of staff] didn’t know how to treat a person with the more informal local government bodies who a disability so she got me in a little room and talked positively and enthusiastically about their she said could you read this bit of paper and I experiences. said what’s this bit of paper about and she said I am rapt with what the [advisory body] is I just want to check that your reading ability is doing…Yes, to me I’m going up and down like a all right …I thought it was going to be easy, no kangaroo because I can see something at the end sorry, interesting and I thought I might be able to of that little hole. (Phillip 12/05) change attitudes of government people and make Kieran referred to the informal conversations them look at people with a disability in a different he had with colleagues which made him feel way and it has taken me four years to get people welcomed and included. He felt they listened to with a disability heard [to] listen to people with him when he was chairing meetings and they a disability. But it hasn’t always been smooth supported him when he needed help in the sailing because I have had to fight to get heard. meetings. Jana spoke enthusiastically about her Even now I don’t get heard. (Hannah 11/05) colleagues, recollecting their personal details, Andy, a member of the same body talked about and Karla felt well supported by her colleagues, how hard it had been for him to talk at meetings particularly at times when she became emotional and felt inadequate compared to the others in meetings, and she felt that people did respect members. One of the reasons for this he said was her. that the chairperson spoke most of the time but I just sat and watched then one time they asked he also blamed himself for not participating well who would like to be voted to be chairperson and enough: I put up my hand and said I would like to give it Oh I think sometimes, oh well, sometimes I don’t a go. It’s a good role; it gives you self-confidence listen very well …I am not taking enough interest that you can do it… If I can do it then somebody in what they are talking about. What else?, I am else can do it. Down syndrome people can do not taking enough time……Yeah I think they have it, if someone can’t speak they should be on the [more experience] they go to a lot more meetings committee. They might [have to] print a little bit than I do. …My knowledge is not as good as other of paper out or have their signs but they can do it. people’s; oh I think a lot of people with disabilities (Kieran, 10/05). haven’t got the education, or haven’t got the Karla reflected on the way they felt respected, knowledge. Because I haven’t been to school… I accepted and listened to by other members of the haven’t been to TAFE, I haven’t been to uni [sic] advisory body. to study. (Andy, 09/05) I think every person on council respects me.. Both Hannah and Andy were also disillusioned every person on that council has treated me as at the degree of power accorded to the advisory a human being no one has said ‘oh we are not body and themselves as members. working with [Karla] because she is a person with Some Ministers are full of promises and some an intellectual disability’, or they have never said Ministers are there and say we will do this, we that people with an intellectual disability should will do that, [the Minister] has only been once to not be on council, never said that and so forth, not a meeting…We don’t know what the Minister is since I have been on there. (Karla 02/06) going to do. (Andy 02/06) Kieran and Jana echoed this feeling of respect The problem is you can’t always get to the and the existence of supportive relationships with Minister’s advisor even on the [advisory body] other members of the advisory body but also but it is easier than when you are an outsider. The alluded to the procedures and ways of operating …chairperson can meet with the Minister and put that encouraged their participation. up our ideas but people with a disability still get Yes, I let them know I have got something to walked over. (Hannah 12/05). share, and I listen to them yes. There’s good Although all four members of the more formal communication, there is no one left out sort of. State and National advisory bodies had problems For someone with a disability it works. Someone
Fourth Annual Roundtable on Intellectual Disability Policy 47 is always there for you to help you if you got stuck private lives, but also in the formal world of their or something, someone will always be too happy institutional roles” (2002 p. 4 ). Notably Hannah’s to help you, yeah that is why I am on it for a long comments seem to suggest she previously had time. We talk, if its one thing that might take a this type of relationship which was ignored rather bit longer we will plan a meeting for that and than nurtured. we might talk about that one thing on a different Because I am supposed to have an intellectual night. Then we stick to that and we talk about it. disability and other people didn’t…because I said .. I might get a little bit stuck so I get some help at that time Mary and Brenda are on the council from Harry, Oh he’s on the [advisory body] Yeah with me and I know these two ladies well I said he’ll help me if I don’t understand something, ‘I won’t need someone outside because I know he’ll help me read it out, because he used to be the [them]’she [the secretariat worker] said ‘oh no Chairperson. He sort of knows how it should go. you can’t have them’ …I was told I couldn’t have Meetings are pretty all right but sometimes if I get [them] because [they] were there with their own stuck he helps me. (Kieran 10/05). hats on. So in that time, I did get a support worker We go around the table and everyone can have but [the two other members] were always helping input, what do you think of this? Someone me. (Hannah 02/05). presents then after people present, then we go around and say what do you think of this? and Types of Support people have their say. He [the Chairperson] gave As already discussed the procedures adopted people a fair go, people put up their hands and and social milieu of some advisory bodies were that, and people would say “hang on wait your an important source of support in creating turn”, this person is there, first it’s [Jana] or this opportunities to contribute and the confidence person and that... [my friends]. There is [names to do so. The nature of the more formal support member], she’s from, I think she is from Adelaide available to participants took various forms with her gorgeous blind dog, what’s his name? depending on resources available and internal oh I have forgotten her dog’s name again. And decisions made by each advisory body and is there was another lady, [names her], she is from summarised in Table 5. As this table shows, Western Australia I think, no umm somewhere the focus varied from access to information, and she was telling me about her pet snake knowledge development, engaging in processes, [laughs]… Jana 11/05. forming relationships with stakeholders and skill Mary and Stella who supported the Hilltown development. These are the elements identified advisory group spoke warmly about the role that in a Joseph Rowntree Foundation (2003) report Martin played in their group. as important in supporting service users to Martin is an extremely valued member of the participate in disability organisations. Although group. He is not lacking in confidence and he at some sites had multiple types of support no is an incredible participant at meetings. He one site provided all the elements suggested by doesn’t get any help at the meetings and he rarely the Rowntree report. The most common type of misses a meeting. He has something to say about support was individualised provided by a support most things on the agenda… I think Martin worker to help with access to information, however reminds us that he is the type of person we are help of this nature was also provided through working for. Without us working [with Martin] more collective group processes in the smaller we might not have informed input. Martin gives less formal local government advisory bodies. the group feedback, it is not always on the topic However, despite the emphasis as suggested but sometimes it is. At the meetings he comes earlier most participants struggled to understand in with his bag with all the books/minutes in the information or have a good knowledge about it. He is very organised and connects with this both the issues dealt with by the advisory body information. He is very helpful. and its processes. Participants who had a sense of confidence and There was only one site where participants had meaningfulness about their participation were received training on participation, meeting skills also those who felt other members had had a and how to communicate effectively in these positive regard for their capacity and potential forums. The other major gap was in regard to to contribution to the business of the advisory support for building relationships or networks body. The types of relationships they had with with people outside the advisory bodies to inform other members is similar to Reinders’ ideas about or strength their participation. civic friendships, which he sees as occurring A recent study of participation by people with at the intersect between the peoples’ personal intellectual disability and families on the advisory and the civic lives, “...people with an intellectual boards of University Centers of Excellence disability need allies and buddies, not only in their (Caldwell, Hauss & Stark (2009) found five
48 Fourth Annual Roundtable on Intellectual Disability Policy Table 5: Approaches to participation support
Type of Advisory Body Goal How it is provided Focus of support Support
Individual Central Support the 1:1 support provided Access to information Northern individual with by a support worker Knowledge development Southern an intellectual employed on an Personal/emotional/moral support disability to ‘hourly’ basis. participate in the meetings
Shared Seascape Support all One worker or a Access to information Hilltown members to number of staff Forming/building relationships with Greentown participate and are assigned to the stakeholders [Through the to support the advisory body from the Engagement with the participation secretariat in functioning of the relevant government process Southern, Central advisory body. department. and Northern]
Collegiate Seascape People supporting People working Building supportive relationships Hilltown each other together as colleagues within the group Greentown within the advisory Engagement with the participation bodies. process Evident in groups where shared support was the key approach to support. Procedural Northern To have meeting Normally facilitated Access to information Central procedures that by the Chair and/or Engagement with the participation Hilltown are accessible and secretariat to eliminate process inclusive. procedural barriers to participation
Specialist Greentown Provide short term, Bringing in external Access to information additional support trainers or advisers on Skill development or training. specific topics or skills. Knowledge development major themes emerged in relation to support for advisory bodies in a way that is meaningful to participation; individualised supports, financial them, given the right participatoryparticipatory support, coordination and communication, environment that is able to engender collegiate leadership development and value and outcomes. and civic friendships and provide tailored training Similar to the findings in the present study and support. A significant obstacle for several this study found that there needed to be equal was a milieu in which they felt they were not commitment to the tangible and more intangible respected and which undermined their confidence. aspects of support, in particular it highlighted the All participants struggled to understand the importance of the attitudes of those ‘in power’ information provided and engage with the issues to ensure these boards are well supported and dealt with in meetings with the type of support the input they have is heard and valued. The provided. These findings suggest that support study also found that where there leadership for participation must be multi dimensional, development was provided for people with an comprising much more skilled forms of practical intellectual disability it made a difference to their support and adjustment to operating procedures participation, however only a handful of skilled which are underpinned by advisory body milieus self advocates seemed to access this training and that respect the capacity and right of people with they were over-utilised on boards and committees. intellectual disability to participate and foster This aligns with the findings in the present study supportive relationships with other members and and suggests the need for a better commitment secretariat members. to building the knowledge and skills of people There is no suggestion that this small group of so they can participate meaningfully in a broad people are in any way representative of people range of forums. with intellectual disability, rather all except one were experienced activists with many years of Conclusions political apprenticeship served as members of self This study demonstrates that some people with advocacy groups. This suggests that a flourishing intellectual disability can participate in disability self advocacy movement with the capacity to
Fourth Annual Roundtable on Intellectual Disability Policy 49 provide such training and experience might be an AIHW. (2007). Current and future demand for specialist important foundation for citizen participation by disability services. Canberra: Australian Institute of people with intellectual disabilities. In Australia, Health and Welfare. unlike the UK, the role of self advocacy as a Arnstein, S. (1969). A ladder of citizen participation training ground or a source of peer support and in the USA. Journal of American Institute of Planners, legitimacy for people with intellectual disability 35(4), 216-224. appointed as members of advisory bodies has not been seriously considered. Though it is seldom Barnes, M., Newman, J., & Sullivan, H. (2007). mentioned in recruitment processes, and too Power, participation and political renewal. Bristol: The often people are simply seen as embodying the Policy Press. intellectual disability perspective, it is clear from Beresford, P., & Croft, S. (1993). Citizen involvement: this study that people with intellectual disabilities A practical guide for change. Basingstoke: Macmillan bring quite different political orientations to Press. their membership of advisory councils. It may Booth, T., & Booth, W. (1998). Growing up with parents be worth considering therefore the issue of who have learning difficulties. London: Routledge. ‘representativeness’ and the appointment of at least some members with intellectual disability Boyce, W., McColl, M. A., Bickenbach, J., Tremblay, on the basis of their affiliation to the principles of M., Crichton, A., Andrews, S., et al. (2001). A seat at the self advocacy movement. If this were to occur the table: Persons with Disabilities and Policy Making. it would provide both a constituency from which Montreal, QU: McGill-Queen’s Press. to garner views and an important source of peer Caldwell, J., Hauss, S., & Stark, B (2009) Participation support for advisory body members. of individuals with developmental disabilities and Figure 1 illustrates a tentative model of the families on advisory boards and committees. elements that must be taken into account in Journal of Disability Policy, 20(3), 101- 109 supporting meaningful participation in advisory Carey, A. C. (2003). Beyond the medical model: a bodies by people with intellectual disability. reconsideration of ‘feeblemindedness’, citizenship, Figure 1 Components of meaningful participation and eugenics restrictions. Disability & Society, 18(4), 411-430. Structure Personal/ Support Concannon, L. (2005). Planning for life: Involving Processes Political Adjustments adults with learning disabilities in service planning. Ideologies Modes of Relationships Abingdon, Ontario: Routledge. operating Approach Richardson, A. (1983). Participation. London: Routledge & Kegan Paul. Representation/Self Avocacy Redley, M., & Weinberg, D. (2006). Learning disability and the limits of liberal citizenship: Central to this model is an understanding of the Interactional impediments to political empowerment. personal and political reasons that each person Paper presented at the IASSID. with an intellectual disability has for participating. Reinders, J. (2002). The good life for citizens Inclusion of people with intellectual disability in with intellectual disability. Journal of Intellectual civic and political life will only be achieved if those Disability Research, 46(1), 1-5. who are willing to participate are accepted into the policy making arena as members of the disability Riddington, C. (2007). Learning disability partnership policy networks with something to say and the boards: are service users really insiders? Retrieved milieu, structures and processes of participatory March 1, 2007, from http://www.communitycare. forums are sufficiently well designed to ensure co.uk/Articles their voices are heard and can be acted on. Patemen, C. (1970). Participation and Democratic However, the recent findings that despite a long Theory. Cambridge: University Press. history and the growth of participatory forums, in 2006 only 29% of all Australian citizens felt Simons, K. (2000). A place at the table. Kidderminster: they had a say on communal issues of importance BILD Publications. is perhaps an indicator that we are only just Stainton, T. (2005). Empowerment and the embarking on this particular journey of inclusion architecture of rights based social policy. Journal (Social Inclusion Board, 2009). of Intellectual Disabilities, 9(4), 289-298. Todd, S., Felce, D., Beyer, S., Shearn, J., Perry, J., & References Kilsby, M. (2000). Strategic planning and progress AIHW. (2003). Disability prevalence and trends. (No. under the All Wales Strategy: Reflecting the cat. no. DIS 34). Canberra: Australian Institute of perceptions of stakeholders. Journal of Intellectual Health and Welfare. Disability Research, 44(1), 31 – 44.
50 Fourth Annual Roundtable on Intellectual Disability Policy UN. (2006). Convention on the Rights of Persons with Wilenski, P. (1986). Public power and public a Disability. Retrieved August 20, 2007, from http:// administration. Sydney: Hale and Iremonger. www.un.org/disabilities Wolfe, D. (2002). On the value of citizen Van Til, J. (1984). The future of public decision- participation: a review (1). International Journal of making: citizen participation in the future. Policy Politics and Ethics, 2(i), 3-20. Studies Review, 3, 311 – 322. Whittell, B., & Ramcharan, P. (1998). The All Wales Strategy, self-advocacy and participation. British Journal of Learning Disabilities, 26(1), 23-26.
Fourth Annual Roundtable on Intellectual Disability Policy 51 Organising Inclusion Work: literature, inclusion work has been related to the work of creating ‘enabling environments’ (Swain Key Factors for Success et al, 2004) and the dismantling of exclusionary practices, attitudes, infrastructure and policies. Erin Wilson & Elena Jenkin This is an important aspect of the definition of inclusion to emphasise. Recent research conducted Note: This paper is a short summary of the by Scope suggests that this broader analysis might report published by Scope: Jenkin, E. & Wilson, get lost in the focus on person centred planning E. (2009) Inclusion: making it happen. Key elements and the implementation of plans in the micro for disability organisations to facilitate inclusion. Box environments of individuals. This research also Hill: Scope. The paper reproduces this material identifies that implementation of plans is likely to with permission of Scope. The full report can be be stymied by a lack of attention to inclusion work obtained from Scope. at the meso and macro levels of society. The focus on the broader work of attitudinal, behavioural, Introduction and structural change has been described as a Despite nearing a decade of formal inclusion ‘social engineering’ project by Clement and Bigby policy in Victoria for people with disabilities, (2008: 161). Given the difficulties documented research continues to evidence that achieving by Clement and Bigby (2008) in achieving new inclusion is hampered by a number of key factors. understandings about inclusion among support Recent research by Tim Clement, Chris Bigby and workers even when focusing on the relatively colleagues finds both a confusion about what the straightforward delineation between O’Brien’s term ‘inclusion’ means as well as an over focus on presence and participation, it is not surprising that inclusion as ‘presence’ in community rather than work in relation to this larger social engineering active participation within social relationships project is not well understood or resourced. and communal life (Clement, Bigby, Johnson 2007; This paper presents the findings of research Clement & Bigby, 2008). Using O’Brien’s (1987) conducted by Scope in 2007-2009. It proposes earlier concepts of ‘community presence’ and a way of categorising the dominant modes or ‘community participation’, Clement and Bigby orientations to inclusion work in the disability (2008) present compelling evidence to suggest sector in Australia and identifies the barriers and that for the group of people with an intellectual enablers to it. The research engaged with seventeen disability they studied (a sub set of those moved ‘inclusion workers’ or managers in Victoria and out of Kew Residential Services into community Perth, Western Australia and sought examples of residential units), the focus of inclusion work successful practice along with the ingredients of by disability workers has been overwhelmingly success, and outcomes of the work. Coincidently, on increasing community presence. It should be the majority of examples provided related to noted here that, while not de-valuing relationships inclusion work with people with intellectual among peers with a disability, Clement and Bigby disability, and a minority of these relating to suggest the need for a stronger focus on building people with severe intellectual disability. This ‘participation’, particularly relationships with data was analysed to identify key organisational non-disabled community members, given the factors required for successful inclusion work. disability sector’s success in fostering relationships Most importantly, respondents were also asked between peers with a disability. They argue that to identify the outcomes of inclusion work for people with an intellectual disability are limited individuals with a disability and their families, by the distinct social spaces they inhabit that as well as for services, and for the communities largely consist of other people with intellectual with whom they engaged. The paper offers a disabilities, staff and relatives. This is a useful way of conceptualising the breadth of inclusion nuancing of the notion of community participation work, including work focused on presence and for people with intellectual disability, as it brings participation, as well as the larger scale activities into sharper focus the activity of inclusion work of social engineering or social change. The in dismantling these social spaces by facilitating paper presents key ingredients for successful new relationships with others particularly those organisational approaches to such work. not of these groups. For the purposes of the Scope research, inclusion The focus on O’Brien’s concepts of ‘presence’ and work was defined as supporting people to achieve, do ‘participation’ appears to have proven useful in and be in life in the ways they choose and identifying changing the focus of disability support workers and removing barriers to this in society, services and (Clement & Bigby, 2008). Of course, notions of individuals. In this way, inclusion work selected for inclusion also encompass the experiences and the research encompassed a range of individuals, structures of exclusion that operate at multiple practitioners or organisations that used a range of levels throughout society. Within the disability strategies to enable:
52 Fourth Annual Roundtable on Intellectual Disability Policy • people with a disability and their family to health system. Joe met the local inclusion worker achieve their life priorities and /or who is based in Joe’s suburb. They met weekly to • community / communities to include and talk, and develop a relationship. Gradually, the welcome people with a disability. inclusion worker drew in people to support Joe to achieve his goals to own his own home, gain • The definition adopted here suggests that employment, become a DJ and be involved in the inclusion work involves a broad set of change football club. The inclusion worker linked Joe to actions that may focus on individuals, families, different people that supported him with various services, groups, communities and systems. interests. One included a mentor from the local church. Joe met a few men his age and identified Orientations to Inclusion Work the person he felt most comfortable with. The Early in the life of the research, Scope researchers mentor was a similar age and they started going identified that disability organisations and out together. As Joe came to trust the mentor, they practitioners have employed various modalities went to the pub regularly, had a meal and played and approaches towards inclusion work. Some pool. Joe attended a modified DJ course through a focus on individuals, some on opportunities in University and he completed the course and was community, some on larger systemic changes, and presented with a certificate. He was then linked others on combinations of these. These different with a DJ mentor for a few hours every week ways to focus the work were named ‘Orientations’ to build up his DJ skills. He is now a DJ once a to inclusion work, and provide a helpful way to week for a local community radio station and has understand the ‘what’ of inclusion practice. become well known in his area. Joe’s story covers a five year period. Orientation 1: Individual Person-centred Work Leads to Inclusion. Orientation 2: Opportunities are Created Inclusion and community building happen in Community. in direct response to the expressed interests, Inclusion and community building require needs, and aspirations of specific people with a workers to be proactive in identifying, creating disability. and offering opportunities to people with a Inclusion occurs after and as a direct result of disability. person centred approaches and/or planning Due to a combination of institutionalisation, a where practitioners have listened to people with lack of empowerment, as well as limited life a disability and consequently identified their experiences and opportunities, many people with aspirations and interests. Inclusion workers then a disability have reduced ability to articulate work alongside the individual to build capacity in their aspirations and goals. Workers seek out communities so there is a direct and meaningful opportunities and develop these based on their link to people’s specific aspirations, interests and own assessment of what is relevant. They may needs. Clement and Bigby (2008) identify the or may not have developed this opportunity more pragmatic reality of this for people with with particular individuals’ interests in mind. severe intellectual disability, where frequently Individuals with a disability are later linked to their preferences are not well known and it is staff these opportunities. This is often an ongoing who typically interpret or name their interests process of experience, trial, expansion and change and needs. for people with a disability. In some cases, these opportunities are created around people with Case Study: Orientation 1 a disability as a group, ie a ‘block’ response Joe, a 32 year old male, spent the second half (Clement & Bigby, 2008). In others, work is done to of his life in an institution. There came a point, prepare generic community activities and groups according to the interviewee, that the institution to include individual people with a disability. decided Joe could live on his own. The institution set Joe up with limited support in a flat and Case Study: Orientation 2 never saw him again. Joe went from having 24 An inclusion worker surveyed a large number hour support, to a 1 hour visit every fortnight by a support person to assist him with budgeting. of people with a disability and found that a Joe felt frightened and became sad. He stopped substantial number of people were interested to going out. The only friends he knew were in the try fishing. institution and he had lost them. Joe couldn’t The worker then mapped the local fishing clubs communicate easily, he didn’t know what he and located one that was holding a ‘come and try’ wanted and within a year and a half a mental day for children. ‘Come and try’ was described by illness developed and he was accessing the mental the inclusion worker as an open day where people
Fourth Annual Roundtable on Intellectual Disability Policy 53 were welcomed to the club to try fishing with the powerful when it includes or is led by people support of club members. The aim of ‘come and with a disability it does not always, or even try’ days in this context was to promote fishing as frequently, include people with a disability as a leisure activity. The worker contacted the club actors. This work is general ground-breaking and suggested they run a similar day for people and foundation-laying work with organisations with severe and multiple disabilities. The worker and communities. It may involve work to change explained that a large number of people with a policies and procedures that have extended effect disability are keen to experience fishing and a (eg the funding allocations for staffing of classes ‘come and try’ day would be a good starting point. at neighbourhood houses, or public transport Over the course of several meetings, and in depth facilities), or change practices and attitudes (for dialogue between the inclusion worker and the example, work to skill psychologists to provide club members, a relationship was developed and appropriate services to people with intellectual the request was agreed to. A partnership was then disability and complex communication needs). developed whereby: In most cases it involves re-visioning notions of • Club members would teach fishing skills to ‘disability’ and ‘community’ services in a range interested people with a disability and, of ways. • The disability organisation would organise Case study: Orientation 3 the registration. A disability agency has redefined and Funding was sought for barbeque and adaptive reconstructed their organisation to ensure their equipment and the club successfully ran two relevance to people with a disability, community ‘come and try’ days in the year with 120 people and government. They have now positioned with a disability participating each time. The themselves as a community organisation rather events were so successful that the club agreed to than a disability organisation. For example, the continue running the two events per year. organisation won a tender to operate a community The club strongly supported the two days a year centre (that has 2000 people accessing the centre but could not see it expanding or that people each week) where they run all activities that with a disability could be members of the club. are inclusive of people with a disability. The The worker helped the club to consider fishing as intent is that the centre will benefit people an ongoing opportunity. A disability awareness with and without disabilities and will provide session was held with local club members and the opportunities to bring people together. This Department of Fisheries. The session was run by model is being replicated by a move to operate people with a disability and it made a significant a second community centre. Other community difference to the way club members saw and services delivered by the organisation include: valued people with a disability. the development of a domestic violence package The inclusion worker enabled and supported people that includes the issue of violence for people with a disability to have a greater involvement in with disabilities and a curriculum that involves the club. The club has been challenged by notions disability awareness; and a road safety program that people with a disability can be club members, (incorporating the link to disability awareness). and can fly fish rather than just bait fish. Support staff were also surprised by the fact that people Breadth of the Work with multiple disabilities can fish. People with a The three Orientations offer different starting disability learnt how to fish and had a lot of fun. places for inclusion work. It is clear from the The inclusion worker is now working with the examples above that inclusion work sometimes Department of Fisheries to transfer this model spans several Orientations. Whilst there are across fishing clubs and also to ensure people strengths found in each, a combined and deliberate with a disability are included in their promotional placement of workers across the three Orientations strategies. can be seen to strategically support inclusive practice as a whole. Orientation 3: Broad Level Community We have already discussed above that inclusion Change. requires addressing barriers that create exclusion. These barriers occur at all levels of society and Inclusion and community building focus on across multiple environments in which people broader structural and attitudinal work. engage. Barriers can be found within attitudes, Inclusion workers foster opportunities for knowledge, skill sets, relations between people and inclusion by focusing on overarching structures, groups or between individuals and organisations, allocation of resources, skill sets and knowledge behaviours and practices (such as professional of various groups. While this work is most or organisational practices), policies and other
54 Fourth Annual Roundtable on Intellectual Disability Policy structures. Within each Orientation, the inclusion that by far the greatest majority of the work was worker focuses on whatever set of these barriers operating within Orientation 1 (94%). Around she/he finds. one quarter of examples were situated in each Each Orientation has a somewhat different of orientations of 2 and 3, with forty percent focus. This necessarily means that the work will (40%) working across more than one orientation. primarily focus on different environments or Organisations took different approaches to levels of society. These loosely correspond to a structuring their work within each of these focus at the micro (or personal) level, the meso orientations. Within orientation 1, organisations and macro levels of society. largely took a ‘case management’ style approach, focusing their inclusion work around identified Orientation 1 work focuses primarily on: individuals and building responses to their • personal and home barriers; needs and interests. Work within Orientation 2 • barriers in disability services (e.g. residential tended to be structured around interest areas or or day services); service types (for example, leisure interests or respite services). In this Orientation, organisations • barriers in non disability organisations (e.g. became specialists in particular interest areas or shops, neighbourhood house etc). fields and worked to build inclusion opportunities Orientation 2 work focuses primarily on: across the field as a whole (eg the field of arts participation, or the field of football). There was • barriers and opportunities in non disability only one example of an organisational approach to organisations / community. Orientation 3. This involved total service re-design Orientation 3 work focuses primarily on: and re-conceptualisation. • barriers of policy, program delivery, facilities Given that inclusion work is occurring at a range and infrastructure across non disability of levels and via the three Orientations, this organisations and community. suggests that the effectiveness of the work rests, to some degree, on the extent to which workers Diagram 1: The focus of the three Orientations of are aware of and collaborate with the inclusion inclusion work work of others across the spectrum. Rather than Wider community treat each set of barriers and issues as unique, and society the work requires a high level of communication, collaboration and awareness of the breadth of inclusion work in action. This will enable the Disability service/ Non disability services, ability to link up change actions and build upon support organisations the successes already established in some areas for more sustainable outcomes. Home, This analysis suggests a strong kinship with family, friends community development work. Drawing on this literature, it is evident that the tasks and activities of inclusion workers are likely to be broad and The person diverse. Jim Ife (2002) confirms that there are a large range of work roles in community work. He divides these roles into four clusters: Orientation 2: Orientation 1: Orientation 3: 1. Facilitative: techniques to stimulate, facilitate Focus on non Individual broad level and support the process; disability person centred organisational, organisations work community, 2. Educational: to do with agenda or direction social change setting, learning/teaching new ways and skills; NOTE: ---- dotted line denotes a lesser focus or decreased frequency to the work. 3. Representational: interacting with external bodies on behalf of others; What this analysis suggests is that inclusion work requires activity (and staff resources) to be 4. Technical: applying technical skills to aid the focused across all dimensions of a person’s life, process. and to address the barriers to inclusion at a range Each of these four clusters contain numerous roles of levels. Inclusion is a broad-scale activity that that exist within community work. Ife reports that requires the combined focus of Orientations 1, 2 “community work tends to be about doing lots of and 3 in order to ensure that barriers to inclusion things at once, and in any single activity or project are removed at all levels. However, data from the a community worker is likely to be filling several seventeen case studies in this research identified of these roles, and will move between one and
Fourth Annual Roundtable on Intellectual Disability Policy 55 another all the time” (Ife 2002, p. 231). The work needed in order for organisations and governments requires a broad set of skills and is comprised of a to effectively progress inclusion work, drawing multitude of roles. Ife (2002) stresses that dividing together the data presented by respondents about up the work by role and allocating different roles barriers and enablers to inclusion work, and the to different workers (i.e. to become a specialist in key organisational factors required to sustain it. one role area, such as facilitation) will not achieve integrated community change. Inclusion is Everyone’s Responsibility Overall, this conceptualisation of inclusion work and Needs to be Organisationally calls for an acknowledgement of its breadth and Embedded complexity, and of the skill set required to achieve A lack of skilled and committed staff was the most outcomes within it. frequently identified barrier. This encompasses both a lack of appropriate values, behaviours Current Inclusion Work: What Needs and attitudes as well as a lack of understanding to Change of the change from carer to facilitator role. Two The Scope research asked respondents to identify significant findings arise from the plethora of the barriers and enablers operating in their comments on this topic (including examples of inclusion examples. Respondents focused on the staff actively preventing inclusion work). Firstly, factors evident at the level of the individual with a the work of inclusion needs to be ‘everyone’s job’ disability (and their family), at the level of service and secondly, staff roles need to be redefined provider (usually disability service providers), and re-badged as ‘community facilitator’ to focus and at the level of the community with which they attention on what the job entails. As with Clement engaged (sometimes this referred to individual and Bigby (2008), respondents reported frustration community members and at other times to groups with the over-focus on community presence and and organisations). Additionally, respondents a lack of understanding of and commitment to were asked to identify key organisational factors participation. necessary to support inclusion work. Despite its breadth and the wide skill set required All respondents were able to identify successful to do it, interviewees were in agreement that examples of inclusion work. Frequently these inclusion is everyone’s job. Inclusion work examples demonstrated the complexity and should not be assigned to particular staff roles, longevity of the work required. Respondents leaving others to do traditional care work. As one identified significant barriers operating at the respondent observed “we are all facilitators, it level of the individual (and their families); the is everyone’s responsibility”. Inclusion work is a service and staff; and at the level of community. shared responsibility. Interviewees were clear that In particular, respondents highlighted complex inclusion work needed to be a part of all support context of the individuals with a disability and and service roles in the disability sector. the challenges to inclusion work that operated As such, inclusion work needs to be structurally at this level. While trust and commitment were in-built into organisations across all levels. identified as enablers to the work, other individuals An organisational environment that supports found it difficult to overcome their fear and lack of and focuses on embedding change to support confidence. This was identified as the largest hurdle citizenship was advocated as a key enabler, as with stories confirming that it takes considerable was the building of relationships between all confidence to meet new people, try new things stakeholders (people with a disability, staff, and overcome initial fears. Many in this group organisations and communities). Staff won’t were also hampered by complex communication change from ‘carer’ to ‘facilitator’ or inclusion needs, ineffective communication systems and a worker unless they have organisational support range of related behaviours. Additionally, almost to do so. Organisations need to systematically all examples were at some stage negatively affected support and require staff to practice in this by health issues (mental and physical), age (at all way. This includes clear and concrete practices, life stages), and changing or fluctuating needs. priorities and directions around the work, as These personal attributes were exacerbated by poor well as skill sharing encompassing mentoring, levels of formal and informal support, insufficient formal and informal training, ‘checking in’ on assistive technology, and financial barriers. This staff and debriefing. This suggests a major shift range of impediments operating at a personal level and significant requirements for job re-design is significant and suggests a substantial level of and skills development (particularly given a resource requirements. However, added to these more complex understanding of the roles and are the barriers operating at the level of service and skills as described by Ife, 2002). It also suggests organisation. implications for supervisors and management The following summary identifies key changes who need to actively require, support and evaluate
56 Fourth Annual Roundtable on Intellectual Disability Policy the performance of this work in all roles. Inclusion inter-dependent partnership with people with a work requires advanced professional skills as disability, community members, disability services well as professional supervision by people with and mainstream agencies to bring about change. discipline expertise. This suggests an enormous Consistent with previous studies, the attitudes need for professional development at all levels of present in the community were seen to be critical an organisation. to successful inclusion work. Positive attitudes Interviewees also consistently reported on the were characterised by a commitment to interact, importance of recruiting staff with the ‘right’ values a willingness to seek appropriate resources, and and the attributes of facilitator or connector. Values openness to flexibility and adaptation. Leadership and personality were seen as more important by key individuals who championed inclusion than qualifications. With such staff in place, it was identified as important as were partnerships was felt that organisations can then invest in between groups and organisations that unlocked equipping them with relevant skills, such as person resources and support. centred approaches, facilitation, and community Co-ordination is critical in order to avoid highly development, via a planned professional atomised pieces of work all commencing from development program or training support. scratch and unable to effect change in systems While the emphasis is on building-in inclusion on a case by case basis. It is also critical to break work into all roles, given both the breadth of down the silo approach to disability services and the work and the skills set required, there is supports. The organisational task now is to reduce also an argument for the resourcing of specialist this silo effect and set up clear communication inclusion staff as mentors, trainers and advisor– strategies whereby people are not only aware of collaborators. Additionally, some Orientations to the important work they are respectively doing, inclusion work, particularly Orientation three but are also able to support each other’s roles and (structural change), may also lend themselves work together for greater outcomes. to targeted work with identified and specialist staffing. Strategic Planning is Needed to Manage the Breadth and Scale of Inclusion Work Inclusion Work Requires Flexibility Inclusion workers need to be strategically placed The most common theme across the interviews was across the three Orientations to systematically flexibility which was identified as the key enabler remove barriers and open up opportunities for (ie the most commonly reported) to inclusion. inclusion to happen. Inclusion work is categorised Respondents reported that organisational systems under the three Orientations but the roles will and approaches prevented inclusion. In one overlap and vary according to the context and case, organisational bureaucracy prevented a culture pertaining to particular communities partnership with a community organisation, and and individuals where the work is placed. in others rigidity of structures such as finance This is a new analysis and way of viewing the and administration hindered implementing requirements of the work. It suggests that further individualised support. To support people with a analysis or mapping of inclusion barriers, and disability to pursue their priorities it was reported an identification of the resources and personnel that flexibility is required across organisational currently targeting these, needs to be done within processes. Supporting the staff to be flexible localities, States, or even agencies to ensure that in their workplace, providing flexibility with workers are situated across this spectrum of the time needed to do the work, or a change from work. Without this, there will be critical gaps and 9 to 5pm hours (so that staff can better support inclusion will be stymied at the level where no people with a disability) were all examples given resources are committed. to researchers. A flexible approach to the work The work needs to be planned and developmental. would harness creativity and innovation within It is not simply about providing a ‘bridge’ for an the workplace, further enabling people with individual with a disability from their current life a disability to pursue their priorities in life. activities into a new set; or simply ‘linking’ them to Resources were also needed in flexible formats a different agency or program in the mainstream and to support flexible approaches such as small community. It is not simply a ‘placement’ task. funding packages that could be approved and Whilst listening to people with disabilities and utilised in a timely manner. developing relationships were identified by respondents as corner-stones to inclusion work, Inclusion Relies on Collaboration, they are not enough. The work demands are more Partnerships and Co-ordination complex and multi-layered than this if the work is Disability agencies cannot do the work of inclusion to go beyond the identification of an individual’s alone. It requires a combined focus with an aspirations to actually achieve them. Disability
Fourth Annual Roundtable on Intellectual Disability Policy 57 agencies and funders need to fully understand the Inclusion requires identified investment that is breadth and nature of inclusion work so they can long term and based on identified aspirations and accurately and adequately staff, organise, support areas of need. and resource it. Government needs to lead the change process Around half of the respondents identified the need that is based on strategic work to overcome for other additional resources to support inclusion existing barriers to inclusion in ‘mainstream’ work. These included specialist psychology, communities and disability services. Through therapy or planning staff, new ‘community person centred planning requirements, the connector’ positions, small amounts of flexible and government now has a mechanism to identify responsive funding, and a wide range of assistive inclusion priorities that are important to people technology both located with individuals and in with a disability and to align inclusion work mainstream community settings. Additionally, to these by region, area of interest, or industry. respondents recognised that community groups This offers a new opportunity to invest in were often hindered by a lack of the necessary inclusion work across all Orientations that funds to support inclusion (to fund things such as matches collective priorities of people with additional support staff or equipment). a disability. Directly addressing the barriers Respondents identified a significant lack of time to inclusion in this strategic manner, requires and resources to do the work of inclusion. The targeted resources (human, physical and work of inclusion encompasses a high workload financial) that are committed for longer-term of new tasks such as building knowledge of a work rather than one-off, short term projects. person’s communication mode, finding funding, Clarify the practice of inclusion work organising activities, attending events and building Disability and community organisations are relationships. The work requires substantial time left to interpret ‘inclusion’, ‘community’ and allocations with some respondents identifying the ‘participation’ how they wish. Clear guidelines need for significant amounts of time, patience and on definitions as well as breadth of the work persistence. The findings indicated that inclusion will support clarity and greater consistency work is far more sustainable when carried out in the practice. Explicit strategies are required over a significant length of time. Analysis of all by government to assist organisations with case studies showed that successful work spanned good practice and to promote the importance extended timeframes from two – seven years. of inclusion amongst the community sector. Without this broader planning and resourcing, Inclusion work requires clearer accountability actions are likely to result in short term mechanisms to ensure all parties can achievements but no long term change, with accurately report on and evaluate the diverse results continually reliant on ‘project’ activity outcomes (and barriers to outcomes) of that is band-aid in nature rather than building- inclusion investment. Such accountability in changes that enable the action to be sustained mechanisms need to affirm creative and varied long term. approaches to inclusion practice and value outcomes beyond ‘presence’ by supporting Implications the longer timeframes required to achieve For government departments these outcomes. Identify the current resources, areas of practice, Actively develop cross-sector collaboration in and gaps in both by mapping current investment inclusion work committed to each of the three Orientations of Government approaches to inclusion work inclusion work. need to be inter-departmental and require cross Inclusion work is critical to achieving sectoral collaboration by agencies receiving outcomes from all government investment in funding. As an inclusion leader, government disability. It requires a focus on and resources needs to resource avenues for people with a committed to all three Orientations of inclusion disability, their families, and disability and work. The concept of three Orientations community organisations to share examples of provides a mechanism to review and map good practice. This exchange of ideas would current investment, practice and gaps in both generate practical suggestions for improved government and non government inclusion practice, build motivation, skill development work. This systematic analysis of and and collaboration. attention to inclusion work is long overdue in government and is the initial piece of work For Organisations necessary to commence activating the rhetoric The research findings of this report are based of government policy in this area. on the experiences of successful inclusion
58 Fourth Annual Roundtable on Intellectual Disability Policy practitioners and provide repeated evidence mentor and support the work as well as that inclusion work works. As such they form leading larger and more complex activities a basis for influencing change and promoting across the three Orientations. Organisations good and consistent practice, resulting in more need to ensure they value and resource staff positive outcomes for more people, families that enact the practices identified in the and communities. Systematic good practice and next section detailing the implications for organisational support is essential in order to practitioners. ensure that all people with a disability and their Develop organisational systems and processes communities receive consistent support to be that are designed to be responsive to individual included and inclusive, rather than a lucky few. contexts. If organisations carry on as before, nothing will change. Flexible systems are needed to be highly responsive to the individual contexts and Inclusion work is core business for disability aspirations of people with a disability. This agencies and must be explicitly present in requires flexible staffing hours, flexible organisational mission, strategies, staffing and payment and invoicing mechanisms among resourcing. other system changes. Inclusion doesn’t work if it’s not explicitly Explicitly require and resource the connection of part of the organisation’s task. Prioritisation of person centred planning and inclusion work. inclusion work has implications for services, organisational strategies and roles. Inclusion The disconnection between person centred work needs to be built into the fabric of the planning and community development/ organisation from the organisation’s mission, building (seen in Victoria) must be rectified. in the strategic plan and via re-construction Valuable information is collected about people’s of organisational roles. Ensure management dreams and aspirations and yet this is not fed understands, practises and promotes into community building strategies, or is left community development principles. to the isolated planning worker to address Strategically place inclusion workers across despite being outside the job parameters of this the three Orientations and ensure regular person. Person centred practice provides vital interface occurs as a priority. This restructure information to ensure inclusion (community is essential if inclusion work is going to building) projects are aligned with people be seriously considered and implemented with a disability’s life priorities. This requires as core business. Without it, other service an organisational recognition that inclusion priorities and deliverables of person centred work is a collaborative exercise and requires approaches, individualised services, and time spent in building relationships and quality practice will be unachievable as alliances between all parties. people with disabilities, families and carers Identify explicit leadership and collaborative roles remain unsupported in their fundamental for people with disabilities and their families. aspirations. All planning and action needs to enable long term activity (i.e. three years or Regardless of the organisation’s primary more) that is central to real and sustainable orientation to inclusion work, people with inclusion outcomes. disabilities and their families must be consulted and supported to drive the work Resource all staff to undertake inclusion work. wherever possible. Leadership opportunities Inclusion work needs to be the job of all staff for people with disabilities and families must as it requires consistent activity towards the be opened up in all forms of inclusion work. identified goals of people with a disability. To This process will also support the work to be achieve this, significant skills development is relevant and sustainable. required for existing staff, along with targeted recruitment strategies that equally value staff Questions to Ask our Organisations attitudes and values along with inclusion skills. 1. What do we understand from the terms Professional development programs need to ‘community’, ‘inclusion’, ‘participation’ and include community development training ‘presence’? as a core base to build staff capacity. Staff require skilled supervision and management 2. In which Orientations does our current processes that affirm and support inclusion inclusion work sit? Is this adequate? work. Specialist staff with advanced skills 3. Are we explicitly interested in supporting in inclusion work (possibly drawn from the people with a disability to lead a life that is disciplines of community development and important to them as defined by them (and social work, among others), are needed to those who know them best)?
Fourth Annual Roundtable on Intellectual Disability Policy 59 4. Is inclusion work our core business? Are our Clement and Bigby (2008) identify a resistance on the mission, strategic plan, budget, job roles and part of some staff to tackling the work of fostering job descriptions aligned with this? community participation and dismantling the 5. Are we genuinely listening to people with a distinct social space which people with intellectual disability and their families? disability often inhabit. Clement and Bigby query what motivators would be effective to assist in 6. What do we do once we have listened? Does this information guide our practice or is it this attitude shift. The Scope inclusion research overlooked and simply a process of courtesy may offer another motivation for this change. that remains too difficult to act on? Respondents were asked to identify outcomes of the inclusion work they described, for people 7. How well do we know the individuals and with disabilities (and their families), for services families we are working with? Do we invest and for communities. Whilst these outcomes are enough time with the individuals and families anecdotal and provided by staff (not people with to build a solid relationship and gain a sense of trust? What would individuals and families a disability or communities with whom they say if we were to ask them these questions? engage), they offer some useful insights into the value of inclusion. 8. How well do we know the communities we are working within? Can we really say we Encouragingly, respondents found it easy to identify have good relationships with the community outcomes for people with a disability and their sector? What would community members/ families and provided many examples. The most leaders say if we were to ask them these commonly reported change (reported by around questions? 50% of respondents) was increased networks, 9. Who are we accountable to in regard to connections, relationships and friendships. This inclusion? What processes are in place to included knowing more people, having friends and ensure accountability occurs? networks, and new or re-established relationships with family members. One interviewee identified 10. How well do we value inclusion work? Are that an individual had ‘positive and reciprocal systems in place to ensure workers can carry out their tasks as a priority and in a flexible relationships’ where there is a mutual exchange. manner? What are they? In this case these relationships developed into a ‘naturally occurring support network’ around 11. How well do we support inclusion workers? some activities. What policies and processes are in place to ensure practitioners are adequately supported “J is now well connected, he has friends, networks and encouraged to develop skills and improve and has reconnected with his family. J had a 40th practice? birthday party and he had plenty of friends.” 12. What principles do we work by? Are all Individuals also increased confidence, trust and practitioners consistent in applying these independence with others valuing increased principles? How do we supervise and support control and initiative. them to do so? Do our supervisors have these “Y has changed, she is much more self assured. skills? She thinks of possibilities rather than thinking she 13. Do inclusion workers collaborate together? has to accept whatever is happening to her.” What processes are in place to ensure regular communication and collaboration occurs? Is Around half of the respondents identified the there enough engagement with others in the increased skills of people with a disability as a disability sectors that may be doing similar result of inclusion. In some cases this related to work? increased communication skills and in others skills were specific to new activities and fields 14. Who do inclusion workers learn from? Are (photography, art, DJ etc). Similarly, around half of they supported with mentors? What other the respondents reported increased opportunities processes are in place to ensure reflection and ongoing learning is a valued and consistent to volunteer, be a mentor or receive material practice? What external forums could we gains (club membership, personal care, payment). connect with to support professional A similar number reported increases in well development around inclusion? being and safety directly related to increased social relationships and being known in the Outcomes of Inclusion neighbourhood. Recent work, including this Scope research, has ‘Due to the fact that C is far more involved, visible and highlighted the significant barriers to inclusion interactive, she is better known in the community and work and helped to identify areas for action. this reduces safety concerns.’
60 Fourth Annual Roundtable on Intellectual Disability Policy Finally, while respondents reported increased Conclusion community presence, this was linked to a range The Scope inclusion research has confirmed many of other benefits and in many cases was also of the findings identified by Clement and Bigby linked to expanding social relationships. Around (2008). Not only is there a lack of understanding half of respondents discussed people going out of the work of inclusion and an over-focus on more, having more conversations with people achieving community ‘presence’ rather than they know from a range of activities as their ‘participation’, there is also an over-focus on paths cross outside these activities, and having inclusion work within Orientation 1, as a case ‘connections’ with particular groups or retailers by case ‘bridging’ role to place individuals in as a result of frequent engagement and knowledge community activities. Whether this has been of a shared interest. One interviewee stated the somewhat influenced by Victoria’s emphasis on individual was ‘now a valued member’ of a person centred approaches, and in particular specific community. person centred planning, is not clear. However, ‘She is now more independent and confident to this paper proposes that governments and go out to the local shops on her own and she does organisations need to step up to the larger task her own shopping. F runs into local people at the of inclusion as a social change project, and both shops that know her through art so she has many plan and resource this work as such. Without such conversations with people along the way’. an analysis, inclusion work will be stymied as Similarly, respondents identified outcomes and each individual meets structural barriers that no changes for communities with whom people agency is responsible for addressing. with a disability engaged, though this thinking proved more difficult for most respondents. As References could be expected, most respondents were able Clement, T. & Bigby, C. (2008). Making life good to report improved attitudes as outcomes for in the community: Building inclusive communities. community where people without disabilities felt Facilitating community participation for people with comfortable and skilled to interact with people severe intellectual disabilities. Melbourne: Victorian with a disability. Community members and Government Department of Human Services. organisations evidenced increased knowledge Clement, T., Bigby, C. & Johnston, K. (2007). and skills, often utilising these skills beyond Making life good in the community: The story so far. the initial person with a disability. In one case, Melbourne: Victorian Government Department of community members so embraced new skills that Human Services. they challenged disability service staff to achieve this level of change and more appropriately Ife, J. (2002). Community Development, Community- support the person with a disability. based alternatives in an age of globalisation. New South Wales: Pearson Education Australia. ‘The community members challenged the support staff to ‘enable’ people with a disability to have Jenkin, E. & Wilson, E. (2009). Inclusion: making it a go. These members were the enablers in this happen. Key elements for disability organisations to scenario.’ facilitate inclusion. Melbourne: Scope. Community organisations also benefited from O’Brien, J. (Ed.). (1987). A Guide to Life-style expanded partnership bases (sometimes with Planning: Using the Activities Catalogue to disability agencies) that increased the sharing of Integrate Services and Natural Support Systems. expertise and equipment in mutually valuable A comprehensive guide to the Activities Catalogue. reciprocal relationships. Pennsylvania: The Maple Press Company. Swain, J., French, S., Barnes, L .& Thomas, C. (Eds.) (2004). Disability barriers – enabling environments. London: Sage Publications.
Fourth Annual Roundtable on Intellectual Disability Policy 61 Some Reflections on What PLA also provides one to one advice to individuals/ families to enable them to form a vision for a good Might be Needed to Assist community life. This may also include assistance People with Disabilities to plan, implement, review and safeguard their vision. PLA places an emphasis on strengthening to Become Authentically & building people’s own skills and building informal networks around people rather than Included in the Community relying only on paid supports. Deb Rouget PLA has also assisted with reshaping disability support services by assisting people with a disability and their families to re negotiate and reorientate Introduction their relationship so that services and supports This paper aims to offer some reflections are authentically driven by the individual/family. on what has been helpful in PLA’s efforts to This has resulted in a number of arrangements authentically assist people with disabilities to that are individually hosted with various services become active contributing and valued members in which the person/family directs all supports. of their communities. Our reflections stem from PLA has also assisted in the establishment of 3 the individuals and families we have assisted self and family governed collectives in Melbourne over many years who have struggled to live a (Nightlife, Living Distinctive Lives and One by “typical” life in the community. A life that is not One. extraordinary but ordinarily of community. The following elaborates on our reflections on what might be needed to assist people with What is PLA? disabilities to become authentically included in Personalised Lifestyle Assistance (PLA) is a small the community. semi-autonomous community based advisory The reflections are also supported by the research service/resource that was developed by families by Cocks & Boaden (2009) and Carver (2009). in 2003. It aims to inspire and build capacity and knowledge predominantly with people who Maintaining Unambiguous Guiding have a disability and their families to enable Principles about Belonging and Social individuals to have opportunities typical of other Inclusion citizens in the community. In a world that is filled with conflicting agendas, PLA employs a part time Manager and Assistant. materialism, business, expedience and other It is directed by a Committee of Management demands, we are continually tempted to pursue that comprises of a person with a disability quick fixes, easy options and compromise our and families together with professionals that values. Our values are at the heart of everything believe in PLA’s aims and principles. In order to we do but are at risk of being most compromised. avoid duplicating administration resources, PLA PLA has worked hard to develop and maintain is ‘hosted’ by Melba Support Services. PLA has unambiguous guiding principles around social operated on a series of non recurrent grants from connectedness. These principles are our guide or the Department of Human Services (DHS). our anchor. We refrain adamantly from subjecting PLA’s believes that all people should have the people to opportunities that would not be available opportunity to pursue a unique lifestyle in the to other members of the community i.e. segregation community that is personally meaningful, relevant and congregation based on disability. One of the and intertwined typically in the community. Its guide posts that families often use is to ask the core principles are authentic community/social question “Would this option be pursued for my inclusion, typical opportunities, empowerment son or daughter who doesn’t have a disability”? and individualisation. “It’s OK to want something better. You don’t To achieve its aims and principles, PLA provides have to accept only what has just been offered inspiration, information and education to people or what has been offered in the past. As parents with a disability, families and professionals via we need to give ourselves permission to think providing theory, a stream of ideas, and practical positively about the possibilities of meeting our (real life examples) that create alternatives to son/daughters needs in a normal way – not segregation and congregation. This is achieved different to our hopes and aspirations for all our through information dissemination, sharing children.” Anita O’Brien (parent) stories, courses, retreats, a bi- annual conference It is not merely enough to have stated values and and other materials such as a periodical, occasional principles. They have to be lived in everything papers and web site. we do. It’s a path that we practice but like all
62 Fourth Annual Roundtable on Intellectual Disability Policy others we are not perfect. We try persistently to the starting point with each person, their vision, reflect critically with humility and openness. This priorities, lifestyle and pace will all be unique to motivates us to do and seek better. Chris Fyffe them. No two people we assist pursue the same (2008) in an external evaluation of PLA, found things. that not only does PLA have operating principles If assisting people to apply for funding, each and values consistent with and aligned to the person’s package is unique and based on their State Disability Plan and Disability Legislation needs. Historically if people have been given and arguably any contemporary disability policy standarised funding packages they all use but, of its self is less remarkable, than the evidence their resources differently and uniquely and that PLA is actually assisting people to live these for different things. There are no predesigned principles. programs, timetable, activity, lifestyle arrangement or destinations in life. The essence is one person at Understanding and Upholding a Person’s a time arrangements rather than groups. Uniqueness – One Person at a Time If people’s visions and plans for the future are PLA believes that all human beings, although unique then frameworks and supports need to sharing similar universal human needs are also be uniquely tailored. Thus what is created complexly and superbly unique! Thus it is an in people’s lives is as many models of support as incorrect assumption to say that people who there are people! have a similar diagnosis or disability want and need the same things out of life. This challenges Identifying People’s Needs and many of the frameworks and services today that Honouring all Aspects of People congregate people together based on disability to We have found that we need to honour all aspects meet an individual’s needs. Such services are not of people, not just their disability. A person’s typically designed to create unique supports, one disability is only one part of their identity and person at a time but are designed to accommodate/ should not define their life. If disability becomes support groups of people who share the same label the person’s defining identity then they are at risk or diagnosis. Kendrick (2009) suggests that one of of living, working and recreating in disability the major assumptions underpinning the practice settings and their lives become defined by of congregating people with a disability is the service routines, programs and relationships with assumption that people who share a similar label professionals and other people with a disability. or characteristic should, prefer or want to be with their “own kind”. This assumption has an impact Michael Kendrick (2009) suggests a range of on how services are designed and ultimately the universal needs that are common to all human impact it has on a person’s uniqueness. beings i.e. work, autonomy, respect, value and reputation, social inclusion, meaning and Kendrick (2009) suggests that many service spirituality, identity and culture, relationship, responses that exist today may be problematic respect for and exercise of rights, financial viability, to upholding a person’s uniqueness because health nutrition, vulnerabilities and safeguards, they are typically deigned before the person learning and growth, communication, leisure, arrive by others rather than with people, designed adaptive devices and transport. Incongruously around generalised specifications rather than although all human beings share some common unique or personal ones (one size fits all), are human needs the way these needs are met will be non-negotiable in regard to individual need and complexly unique! variance e.g. they’re often financially based on pre set assumptions that can’t not be varied to Once people’s needs are identified and prioritised accommodate personal variances, based on service the work begins with people on identifying how related routines that do not vary from day to day their needs will be met in a typical or culturally and week to week, usually inflexible and rigid as valued manner. to model, method & resources and lack authority sharing with individuals and families. Meeting Needs in a Typical Way: Understanding Social Role Valorisation PLA attempts not to make any assumptions about people or begin with preconceived ideas. We (SRV) & Using the Culturally Valued do not design anything before a person arrives. Analogue as a Way to meeting needs Thus when people ask for assistance we have Although a complex theory, with increasing debate to start to get to know them and those who as to its relevance today, Social Role Valorisation love and care about them. This takes time as all (SRV) has offered us a remarkable explanation people are different. They have unique histories, and foundation for why people are devalued or experiences, needs, passions, interests, dreams, rejected by society and how people can be accepted routines, priorities relationships etc. Therefore and valued. Wolfensberger (1998) defined SRV as
Fourth Annual Roundtable on Intellectual Disability Policy 63 “the application of what social science has to tell as different and often denied this opportunity. us about the defence or upgrading of the socially Thus special work places have been developed for perceived value of people’s roles” p58. This can be people who have a disability which do not offer done through enabling, enhancing, maintaining the same richness of opportunity. and defending valued social roles for those at The constant question we ask in our practice risk by using culturally valued means as much as is “if any other citizen had this certain need or possible (Wolfensberger,1992). want, where would they pursue it”? This way SRV conveys to us that often people with a of thinking prevents us from thinking “special disability are devalued in society because of a group” for people with a disability and thus perceived difference, characteristic or identity. helps to prevent the continued segregation and If a person is seen as being of low value then congregation of the people we assist. It has become they are at risk of not being treated equally, an automatic response in our thinking which not afforded the same opportunities as others from the onset steers us to community belonging in society or treated differently i.e. low quality and connectedness. treatment, housing, services, lack of employment For other needs the same thinking is followed – If opportunities, strange routines determined by a person needs a home they might use a real estate staff etc. The person will also be at risk of rejection agent not disability services. If they need financial and then separated and/or exclude and denied assistance to rent a house and can’t afford it they the good things in life e.g. respect, supportive might find a flat mate. If they need assistance relationships, no access to the community/food/ to live in their home they live with a friend or holidays or other. Once rejected or excluded from housemate. They don’t tend to live in a group “mainstream” society people’s needs are seen home that is controlled by an agency! If they want as “special” or different, thus needing “special” to make friends they might join the local Rotary or “professional” help to meet all of their needs. Club. If they have a spiritual need they go to the Once people are segregated from society they are local Church or Buddhist retreat. If they want to denied the richness that community has to offer learn ceramics they go to the local potter’s studio or the opportunities that most people take for or community house. If they need to further their granted. education they go to the local university or school One way of overcoming the impact of social and so on. For example articulating Rachel’s need devaluation, Wolfensberger (1998) suggests, is for work was clearly articulated in the following by assisting people who are devalued by society manner: to develop valued social roles. “A social role ‘Rachel needs to have a paid job which is based may be viewed as a combination of behaviors, on her interests and abilities, respectful, local and functions, relationships, privileges, duties, and in the community (not segregated, in “special” responsibilities that is socially defined, is widely disability settings, with other people who are understood and recognized within a society, and vulnerable or have disabilities). The work place is characteristic or expected of a person who should be friendly, organised, spacious, not too occupies a particular position within a social crowed and enhance Rachel’s valued roles. Rachel system.” p 25. wants to do something that “is challenging and Wolfensberger (1992; 1998) also described the meaningful.” Culturally Valued Analogue (CVA). This is a There are so many opportunities in the community useful way of thinking about meeting a person’s that we fail to notice because of thinking needs i.e. what valued ways do other citizens “disability” rather than thinking in terms of the in our society or culture meet this particular Culturally Valued Analogue. The community is need? It may be a certain practice, pattern or awash of prospects waiting to be engaged and custom. For example, if someone needs money in taken advantage of! Australia they get a job in much the same way as Once people are in such valued roles, community other citizens by using their networks, word of members are more likely to see people for what mouth, newspapers, community adds (e.g. in shop they contribute rather than their disability or label. windows), starting a small business based on their The practice of meeting needs in a typical manner skills, volunteering to develop skills, studying etc. can have many positive effects e.g. reduces social They do not automatically seek welfare or attend isolation and increases engagement with the rest a sheltered workshop! of the community, increases positive role models, Along with the valued role of work comes many various and multiple learning opportunities other valued roles e.g. colleague, contributor, to develop and reach one’s full potential, the friend, social organiser, shopper, wage earner, tax development of a wide range of associations and payer etc! The common assumption though is that friendships other than disability professionals and people with a disability can’t work as they’re seen other vulnerable people, broadening of secondary
64 Fourth Annual Roundtable on Intellectual Disability Policy interests that lead to further opportunities, lives of exclusion and isolation. The institutions increased safeguards as people are known in the that once housed them may be closed, but the community, increased community support and inequity remains. Where once they were physically acceptance, less reliance on paid support etc. segregated, many Australians with disabilities ‘Cameron is employed part time by a local business. now find themselves socially, culturally and It is an award paying job. Recently the Manager at politically isolated. They are ignored, invisible Cameron’s workplace said that not only did he do and silent. They struggle to be noticed, they a wonderful job but the workplace had a different struggle to be seen, they struggle to have their feel and some staff reported looking forward to voices heard.” coming to work on the day that Cameron worked! PLA stemmed from the struggle of individuals Cameron’s shared interest of sport also led to a and families who felt that they had been “shut weekend away with his boss and work mates to out” and did not belong to the community even the International Cricket in Tasmania. On his with countless services, strong policy direction, birthday, to Cameron’s delight, his workmates good intentions, aspirations and Person Centred organised an autographed Collingwood Football Plans! Individuals felt marginalised, segregated, Club jumper as a gift. Cameron’s work mates congregated and rather than being seen as citizens were invited to his 30th birthday party. When they were seen as clients attached to services. there were job losses at his work place he was Often a person’s every need and movement was retrained!’ determined by professionals and services. It is not to say that community can meet every Inclusion means different things to different need but it should be our starting point to think people. Vanier (1988) suggests that community is about every need. If it can’t be found in community a place of struggle and sometimes of conflict but then perhaps it a specialised service may be useful also it is a place of celebration, joy and ultimately e.g. a person with Cerebral Palsy may need a of human fulfilment. Historically congregate physiotherapist with specialised skills however services have been built around people with a the therapy could be carried out at the local gym disability to protect them from the struggle and rather than at a special day service for people conflict that arises in community. But in doing with Cerebral Palsy. In addition this is only one so services often prevent the celebration, joy and need. The other needs of the person could be met human fulfilment that community brings. entirely in community. PLA does not see that inclusion is a fantasy, an idealist place, somewhere you belong a bit, a choice, Understanding & Strong Ideas of what a panacea or a beautiful place where nothing goes Inclusion Is & Is Not (i.e. not a program) wrong. Neither is it access, a program, a bus trip, a group outing to a park, “special” groups for As we advance into the age of technology and “special” needs at the local neighbourhood house materialism, it seems that community inclusion or time filling activity. It does not view social and community belonging is not just an issue inclusion and belonging as a need only of people for people with a disability but for all of human who have a disability but for all community beings. members. Often what makes it more difficult for the people In ordinary terms “inclusion” is what the human PLA assists is that they have often journeyed race wakes up to everyday. It’s our neighbours, unwittingly into an unfamiliar culture. A culture families, schools, associations, friends, businesses that has a heightened tendency to believe services, and governments. It’s an intricate web of experience experts or professionals are the only way to meet and opportunity where we belong, learn, love and one’s every day needs rather than looking to their grow from the moment we are born. It’s very neighbour, friends, family or community to meet “ordinary” and very familiar. their needs. For example an interest in art can only be supported in a specialised art service for Wills and Jackson (1996) suggested that inclusion people with a disability. in regard to mainstream schooling includes being physically included, socially included and The report “SHUT OUT: The Experience of People included in regular curriculum. Thus, social with Disabilities and their Families in Australia” inclusion is more than physical presence – it’s outlines the continuing challenges for people with also a sense or feeling that you belong, are disabilities to be included in community life. The welcomed, connected, have something to offer Executive Summary states: or reciprocate and are surrounded by a range of “Once shut in, many people with disabilities now relationships other than those which are paid or find themselves shut out. People with disabilities based on diagnosis. Janet Klees (2005) suggests may be present in our community, but too few are that we can’t force relationships to happen but we actually part of it. Many live desperate and lonely can build a context for relationship to grow and
Fourth Annual Roundtable on Intellectual Disability Policy 65 flourish with other community members. Thus expectations about people are vital to imagining enabling and supporting people with a disability better as it frees one up to countless possibilities to also experience, contribute, learn, problem solve i.e. believing that all people seek happiness and and belong to what is good and difficult about fulfillment; have the ability to learn, grow and community, can only happen through every-day develop regardless of their age or disability; can or typical opportunities. If other citizens cannot love and be love; are equally as important as participate on equal terms in an experience then each other; have strengths and weaknesses; can we believe it is not genuinely “inclusive” or “of contribute and become valued; belong to the community”. community; live in their own home with a range of supports. Finding People’s “Hook” into Community Life The “Right” Support We have found it important to discover what might Many of the people we have assisted have complex “hook” people into community life. This is done disabilities. Thus they need personally tailored by discovering and harnessing people’s unique support to participate in the community. Support interests or abilities. For example what is the workers that have been engaged are more like person passionate about, what makes the person social networkers or community connectors rather “tick”, what gets the person up in the morning, than “Disability Support Workers”. They need what does the person enjoy most, what is the to be able to not only research and know the person good at doing etc. Once a person’s “hook” local community but keep their eyes peeled for is found it offers an opportunity for the person opportunity and nurture possible relationships to share their common interest, cause, desire and friendships. or skill with other members of the community. Those relationships which have flourished have Once people share their interest it also provides taken intentional effort. For example invitation, an opportunity for people to get to know each building moments for reciprocity e.g. giving a other in terms of the interest. In addition if person a lift to art class, collecting a person’s mail people contribute their skill then others see the while they’re away, encouraging and enabling person as having ability rather than disability. community members to support the person This highlights that people are more than their (even in small ways), sharing secondary common disability. Fear of the unknown often subsides as interests such as Cameron had with cricket. people see people as having interests and skills This gradual and thoughtful work of drawing not that different from their own. community members into people’s lives will not ‘Lauren was passionate about TV and soap operas. just happen by chance. It’s a skill that is vital but Her passion was her “hook” into community life. is not always fostered or recognized and fostered It was harnessed by her family and she became in support workers. an usher at a large theatre in the city. This was a great opportunity for Lauren and her self esteem Being in the Driver’s Seat: Control & and skills began to flourish. However her family Directing One’s Own Life & Supports really wanted her to belong and develop friends with Assistance Support From Family at her work place. Being a Melbournian Lauren &/or Other Trusted People is also passionate about football. Her family then used her passion for the Kangaroo’s Football Club PLA believes people should determine their own to “hook” her into her work place. They discovered lifestyle and if people require support to do this many other passionate football followers! Lauren then it needs to respond in a way that is enriching, then went on to attend various football matches life enhancing and supports their decision making. This means that people should have choice over with a co worker who even went to the Footy where they live, who they live with, what they do, Show with her!’ where, when and how etc. People should also have say-so over resources and supports if required. The Power of Positive Expectations and Although this is quite complex for people with Assumptions about People communication difficulties they can generally let If one is surrounded by positive expectations and people know in some way what things, people assumptions then they will have a chance to live or places annoy or delight them. The art is in up to them. Alternatively if they are surrounded tuning in to people! It is also about engaging and by negative expectations and assumptions then harnessing the knowledge and strengths of those they will live up to those too! This is not only who love and genuinely care about them. about people with a disability but also fellow However, PLA avoids defending the choice of community members. segregation or congregation of people with a Positive expectations and assumptions and high disability. Until people have had the opportunity
66 Fourth Annual Roundtable on Intellectual Disability Policy to pursue a typical life of inclusion the choice of a personally tailored manner that meets their segregation/congregation is not a choice but one needs within funding guidelines and other legal of limitation based on a set of assumptions about limitations. It also means people are able to what people want and need and often an inability chose what they do, when, how and who with. to think beyond such arrangements. This includes selecting and directing support Most people PLA has assisted have experienced workers if necessary. An additional benefit is that people have not had to operate a “business” a lack of authentic control over their life and to have their needs met as the agency takes care supports. For example people were unable to of tedious administration requirements. Melba determine what they did through the day, where Support Services Inc in Melbourne, is an example they lived, who they lived with, selection, direction of a service that has hosted such arrangements and scheduling of support workers amongst many with individuals and families for nearly 10 years. other things. They also lacked knowledge or control of their funding budget. Predominantly Another method PLA has used is to assist people such decisions were made by services. As a result and families is to create consumer or family people had many restrictions placed on their lives governed collectives. Such examples are a means or a limited menu of options. in which people and families who share similar values (of individuality, empowerment and typical At a systems level, Fyffe (2008) states that the pathways) come together in a collective. Collectives outcomes of PLA are impressive as it places have often developed from people coming together individuals and families in the driver’s seat and to solve a problem or from a lack of service reduces the demand on services and government options. The advantage of a collective is that by reshaping the locus of control from services although getting on with their own lives, people and DHS to individuals and families, renegotiates have the support of each other, can share some relationships and expectations and has assisted resources e.g. a shared coordinator, knowledge, people to become more resourceful and to see the information and guest speakers etc. Members value of informal/natural/community supports often inspire and support each other in a manner rather than see funding as the only solution to a that is unlike typical service provision. Examples good life. In addition Fyffe (2008) states that PLA of collectives initiated with the assistance of PLA has also had an impact on re-orientating services are One by One, a family governed service to through the development of individual and family enable its members to gain the support needed to governed collectives, hosting arrangements with live personally tailored community lives; Living traditional providers and assisting with the Distinctive Lives, a family governed collective identification and engagement of natural and to enable its members with disabilities to live in informal supports. their own place away from the family home; and The shifting of the locus of control from services Nightlife, a consumer governed flexible, on call back to the hands of people themselves has night-time service for people who live in their predominantly been achieved by PLA through own home. These collectives also have a “hosting” “recrafting” traditional congregated, program, arrangement with a service provider who delegates centre based or service driven decision making conditional authority to the collective in regard processes. One method has been through to day to day operation, membership, resource assisting people/families to establish Individual allocation, staff etc. The benefit of such collectives Arrangements in which the person (with the is that people are genuinely empowered at both assistance of their family/advocates if necessary) is an individual level and at a service design and empowered to make decisions over their own lives. implementation level, while gaining assistance To achieve this PLA has assisted people to negotiate from a host agency in regard to administration. Collective membership can also be a useful an agreement with a service provider to “host” safeguard to ensure what is being provided is their individual funding. In this arrangement actually needed and wanted. The collectives the service delegates conditional authority to although useful to people and families are not the person and family to direct their supports for everyone. People and families who join them and resources and make decisions over their need to be able to work together and share the life. The service takes care of the administration same values. requirements and other components of importance as requested by the person. Such delegation, Some Thoughts on Safeguarding and although having conditions that are mutually negotiated and agreed upon (e.g. meeting legal Sustainability: Balancing Formal and requirements of employing staff, duty of care, Informal Supports reporting on funds etc), means that people have Individualisation based on costly paid supports high degrees of transparency over the use of their is not only unsustainable but does not enrich funding and authority to use their resources in people’s lives in freely given relationships that
Fourth Annual Roundtable on Intellectual Disability Policy 67 safeguard people. Individuals with disabilities opportunities, foster valued roles and encourage can be extremely vulnerable if the only supports in and foster relationships between people with a their lives are paid. Paid supports are problematic disability and other community members. and can be more prone to disappear as their ‘Originally Cameron received a Support and primary motivation is financial remuneration. Choice funding package to support his vision Fyffe (2008) argues that PLA has assisted people of finding work and living in his own place. and families to see the value of informal/natural/ Through a hosting arrangement Cameron and his community supports rather than see funding family employed a job and community seeker. Six as the only solution to a good life. By building years on he is now employed by a local business people’s awareness and motivations to gradually and supported at his work place by his co workers. and thoughtfully build unpaid supports, people He is also supported to live in his own place with have not only had the opportunity to build a the support of a housemate of his choosing (who wider network of friendships and associations but receives free rent in lieu of support). His funding also build a more reliable safeguard around their package is now only approximately ¼ of the lifestyle that is not paid. original package and significantly less than the Another vulnerability of people with a disability cost of living in a group home.’ is what happens when their family is no longer around. Fyffe (2008) found that PLA has assisted Capacity Building & Exploration & with changing risk by assisting families to answer Consideration of Options through Value the question “what happens when I die” through Based Training, Mentoring & Networking Circles of Supports. Ward, Rodgers and Lys We have found that one of the greatest catalysts (2007) describe Circles of Support as a group of for creating change in ourselves and others is unpaid citizens who come together to support and share a relationship with a person who is through building the capacity and knowledge. vulnerable because of having a disability. For Often people with disabilities, families and many individuals Circles of Support have been an professionals can’t imagine or see past the current intentional strategy of PLA to draw unpaid people way of doing things. Thus they continue to walk into people’s lives to think about and safeguard the same path unaware that a different, more their vision. Circles of Support require good liberating and inclusive path might be possible. facilitation and clear articulation of purpose, roles Often when people become discouraged they and responsibilities. Circles of Support have been may become dismissive and thus even less likely useful to people but are not a magical answer. to seek a new path. People need to be inspired, They take intentional thoughtful assistance, informed and assisted. We have found that it’s perseverance and good values based facilitation. more likely that when people see that something However often Circles of Support can increased can actually be done that they will actually believe links to community. For example one member of it to be true. Warren’s Circle of Support goes to the gym with “Many thanks for a great weekend – very him, another takes him to Salvation Army Band inspirational especially the realisation that even practice every week and another has helped him families who struggle with severe disability have with contacts to exhibit and sell his art work. achieved what seems to be impossible. Also the wealth of practical knowledge & the realistic Good Community Lives Don’t informative way it was delivered – a building of Necessarily Cost More when the layer upon layer which I felt catered to everyone’s Right Supports are in Place interests in the room, so our thanks again. I have worked out an action plan in my head & As we live in a climate of scarce resources, PLA I hope you don’t mind if I briefly run it by you has a philosophy of thinking “how could we do – I would appreciate any feedback you may have differently” with available resources. Resources & assistance.” (SE – parent from Community are never our starting point but once we assist Vision Building Retreat, 2009 ) the person’s to develop their vision, it is then a matter of assisting them to tailor their resources Such capacity building investment needs to be in a different manner. People often save resources multiple and frequent. PLA has used a number of via hosting arrangements as they avoid costly methods to build people’s capacity as one method overhead fees. As people seek support from the on its own is not enough. We have found one of the community and build in informal supports and most powerful ways of inspiring people is when relationships they also become less dependent individuals and families share their own stories of on paid supports. Thus the staff people employ community belonging and connectedness. Fyffe need to be good community connectors who (2008) found that PLA has assisted individuals, can research local communities, discover families and service providers to “think differently
68 Fourth Annual Roundtable on Intellectual Disability Policy and re think” with an emphasis on assistance and • Seminars for individuals, families and examples. professionals on particular topics e.g. People’s personal stories of struggle and Connecting to Community; A Home of My achievement bring such richness and truth that is Own; Circles of Support; Optimal Individual difficult to dismiss. Service Design, Ethical Leadership, When Dreams Become Reality, Consumer & Family “We really enjoyed it [the retreat] and it gave us Governed Services the opportunity to speak with other families in similar situations and with similar ideals... [it] • Family Series on Community Vision Building also gave Chris[husband] and me a rare chance to • Family Retreat on Community Vision talk together and mull things over on our minds, Building not that we got things sorted, but we got things • Bi Annual “One Person at a Time STARTED...the highlight was listening to the Conference” personal stories, and I dream of the day when we can tell W’s story.” (LC- parent from Community • Networking and connecting individuals and Vision Building Retreat, 2009) families who are just starting out with those who have gone before who can provide good “I found the 2005 One Person at a Time sound leadership, ideas and successes Conference inspirational, a catalyst for some significant changes in thinking and planning • Investing in individual and family leadership around our 21 year old daughter ‘K’s’ life who e.g. national and international networks; has significant multiple disabilities. One of many sponsorship of visits or attendance at inter/ direct benefits since has been the formation of a national conferences; developing individuals Circle of Support around ‘K’. The Circle has been and families as speakers successfully active for over 18 months now and • Distributing reading material has added fun, community, complex planning and • Development of a values based periodical many practical benefits for ‘K’ and all involved. ‘K’ had some challenging health issues during this • Conversation! time and the support from the Circle also proved PLA makes a strategic commitment to offer invaluable. We have now become members of capacity building to individuals with disabilities Living Distinctive Lives which was initiated with and families as such opportunities are often only the assistance of PLA. This enables planning for available to professionals. ‘K’ moving out of the family home into her own place which is based on her personality, passions Opening People up to Dreaming and needs. The shift to planning around ‘K’s’ dreams instead of being paralysed into inaction Once people are inspired we have found that by the lack of suitable services has been very people often ask “where do I start”? Thus people liberating”. (B.S) often need assistance to develop a clear vision for the future. This often involves freeing people Capacity building should be offered through up to dream about their own life and letting a range of ways but the underlying factor is go of the limitations. This begins the process of that the methods articulate the multidimensional imagining and thinking about the life they would values of uniqueness, community belonging optimally like to live. It is important not to start and connectedness and empowerment. Fyffe with funding, available services, money or past (2008) noted that PLA builds knowledge and experiences. Dreaming is not about fantasy but informed choice through training and education opening up possibilities and imaging a good events, has encouraged and supported significant life. Many people dampen people’s imagining or lifestyle changes for people, supports the personal dreaming as being unrealistic i.e. it’s only possible development of individuals and families (by for certain people. However, often the essence of a increasing confidence, leadership roles and dream is quite possible. building informal support so people do not feel alone or isolated e.g. people become part of a Often when people get the chance to dream they larger local/national/international network or really want a life with similar opportunities to through localised/personalised supports such as other citizens’ i.e. to get real work, live in their Circles of Support). own home, have friends etc. Such dreams are realistic as we witness people achieving such Following is an outline of the methods used to dreams every day. Often we have found its not build capacity in people with a disability, families people’s disability that limits them but rather and also professionals. the restriction imposed by many services and • Values based trainings such as Social Role systems. So perhaps the real question is do we Valorisation believe it’s possible and do we have the creativity,
Fourth Annual Roundtable on Intellectual Disability Policy 69 flexibility ability and stamina to craft the supports e.g. a work opportunity in a segregated setting it people may need to achieve their dream? is avoided as the experience is not ratified by the Warren, for example, had a strong interest in the vision statement. police force. Some may have viewed his interest as an obsession and the congregated service Staying with People over Time arrangements originally supporting him stifled In our lives we rush from person to person, task any advancement on his aspiration. However, by to task, meeting to meeting hoping that within enabling him and supporting him and his family an instant or a few months we will have a quick to dream, Warren’s interest was harnessed into fix or a solution to people’s lives and it seems that what has been a life fulfilling dream that was once genuine inclusion in the community has eluded thought of as unachievable. us. People and communities are an intricate web ‘After spending many years in disability settings, of uniqueness, complexity and information. It Warren’s family came to the realisation that is an impossible task to “get the job done” in a authentic change was needed for their son and few months as much of the detail around people that would only happen if community members and who they are and can be is unseen and became involved in his life. The journey started unknown by a fleeting visitor. If we are going in 2005 after his mother had been to an event to connect people sincerely and genuinely to the hosted by PLA. With some assistance from PLA community and build typical lives then we must and Living Distinctive Lives, Warren’s family be committed for the long term. This does not began to create a vision for a typical, yet unique always mean people, families and communities life for Warren that is lived in community, and will need the same intensity of support as their that focused on his skills, abilities and passions. skills will develop and strengthen. However as To ensure his inclusion his family believed it was life throws it challenges and changes, people need important not rely to on human services to do the champions to be with them over time. asking, so claimed back authority. Warren moved out of a group home and now lives in his own Conclusion place with the natural support of housemates. Rather than attending a day service for people Our learning about community would not with a disability he now enjoys a rich community have been possible without the efforts of the lifestyle that includes volunteering at The Police individuals, families and professionals involved Museum, St Vincent’s Hospital, The Salvation in the community living movement. They not Army Café, membership of a gym, contributing to only dreamed of an ordinary life typically abound his church, and pursuing his interests in art.’ in community but have worked with vigorous determination over many years to make it a We have found that a dream may begin with a reality. Our work is not a panacea but we have few moments. It then has an anchor to gather found some key ingredients that are helpful momentum. The path seems clearer and thinking i.e. maintaining unambiguous values and ethics differently about people and community becomes about social inclusion, inspiring and educating a natural evolution. It also suggests that anything is possible and people can have a better life. people with information and “real” life stories and giving them assistance over time to craft a unique Articulating a Clear Vision for the Future lifestyle. We know that it is possible and we dream of the day we will not have to argue and write PLA has found it important to anchor people’s about what should naturally occur just because dream into a vision statement so it remains you were born! on track. This is often done through trying to encapsulate the dream in a few words by being References precisely descriptive! For example the following is Warren’s vision statement: Cocks, E. & Bowden, R. (2009) The Personalised Residential Supports Project. Centre for Research “To have the opportunity to be on the natural into Disability and Society. School of Occupational pathways of life, in valued roles that make sense therapy and Social Work. Curtin University of for me. This means I will have the individual Technology. assistance to be myself in typical roles, and be enabled to have access to life conditions which are Carver, J. (2009) A Home That’s Right For Me. Valuing at least as good as the average citizen” (Warren’s Choice, Evolving Individualized Residential Options. vision statement, 2009) Summary Report of Policy Forums. Ministry of This helps to steer all that is done and acts a point Community and Social Services. to check ideas or opportunities. It becomes a Fyffe, C. (2008) Evaluation: Personalised Lifestyles guide for further action. Thus if an idea is raised Assistance. Final Report. December 2008.
70 Fourth Annual Roundtable on Intellectual Disability Policy Kendrick. M. (2009). Optimal Individual Service Wills, D & Jackson, R. (1996). Inclusion: Much More Design. Unpublished Course Material. St John of Than Being There. Interaction, 10 (2), 19-24. God Accord: Melbourne Wolfenberger, W. (1992). A Brief Introduction to Klees, J. (2005). Our Presence has Roots: The Ongoing Social Role Valorisation as a High-Order Concept for Story of Deohaeko Support Network. CA. Resources Structuring Human Services. (2nd Edition). Syracuse: Supporting Families and Community Legacies NY Inc. Wolfensberger, W. (1998). A Brief Introduction to National People with Disabilities and Carer Social Role Valorization: A High-Order Concept for Council. (2009) SHUT OUT: The Experience of Addressing the Plight of Societally Devalued people, People with Disabilities and their Families in Australia. and for Structuring Human Services (3rd ed.). National Disability Strategy Consultation Report. Syracuse NY: Published in Australia under license Vanier, J. (1988) From Brokenness to Community. by Community Resource Unit, QLD Lecture. Harvard University Ward, J., Rodgers, M and Lys. C. (2007). Circles of Support. Unpublished Workshop Notes. PLA. Melbourne
Fourth Annual Roundtable on Intellectual Disability Policy 71 Developing Community and their intellect is equal to their peers on initial assessment. Difficulties arise over time where Participation: an ABI new learning is affected by cognitive hurdles perspective such as memory loss, or poor planning, and the young person progressively slips behind their Janet Stumbo, Tom Worsnop & Cath McNamara. peers. Interventions at early stages will assist in accessing the learning capacity that exists, but often it is not until a consequent assessment Introduction indicates a lowering of intellectual results, that Research literature on community participation interventions are funded. for people with acquired brain injury (ABI) is People with an ABI consistently report their need minimal. What little there is focuses on people to come to grips with a change in their ‘identity, with traumatic brain injury (TBI). This paper recognising that they are the same person, but therefore draws largely on anecdotal evidence, different as well. Concurrently, family (in its obtained through lived experience of ABI and broadest definition) also have to understand this learning gained through working with people process as well, particularly as it relates to changes who have an ABI. in the capacity to continue a family role, e.g. ‘bread-winner’, older sibling or parent. There are Complexity of ABI also people without family support who have to One of the main challenges in looking at do this on their own, without the useful reference participation for people with an ABI is the wide points that family often provides. The process diversity that this entails. Severe brain injuries takes ‘as long as it takes’ and that frequently needs (frequently called ‘catastrophic’) can refer to to be measured in years rather than months or high level physical, communication, behavioural weeks, as would a physical injury. and cognitive changes, dependency for all ADL (activities of daily living) and social interactions, Obstacles to Participation and frequently concurrent issues such as substance abuse, inappropriate accommodation and family As with other disabilities, people with ABI come breakdown. Mild to moderate ABI can mean from different backgrounds and have unique a person does not present with any apparent personal histories and the communities they are disability at all, and is often referred to as a trying to re-engage with will differ according to ‘hidden’ disability. There is, of course, a spectrum those backgrounds and histories. However there of presentations between and around these two are some common themes coming through from extremes. people with ABI about the obstacles they face trying to re-connect. These include: Cognitive and communication barriers resulting from ABI present particular challenges to • “Crushing of hope” by medical professionals community participation that are somewhat is an all too common experience, particularly unique to ABI. This is where there is probably a for people who have sustained severe brain particular ABI perspective that differs from the injury. People with ABI and their families range of common challenges facing people with report being given the worst possible prognosis disabilities, chronic health conditions and other and little hope for any substantial gains. This groups experiencing community exclusion. is most vividly reported about the early post- The first point in recognition of difference is injury period however often persists beyond because of the ‘acquired’ nature of the injury, and this. Maintaining hope, while often labeled by then the additional complexity introduced where medical professionals as “being unrealistic” communication or cognition (thinking) injury or “in denial”, is seen by people with ABI and means the capacity to process the experience their families / supporters as one of the major of change is affected. In contrast to ‘intellectual factors enabling people to begin and persist disability’ the issue for people with an ABI is with the effort to re-engage with life. accessing pre-injury intellectual capacity where • One of the effects of brain injury may be the ‘access pathways’ have been disrupted. This impaired capacity for insight. While stressing is different to supplementing ongoing intellectual the importance of retaining hope and high development, which may also be a feature of ABI. expectations, it will also usually be necessary This is especially so when the injury has for people with ABI to make adjustments occurred in childhood or youth. A frequently for changed abilities. Impaired capacity for cited example of an inappropriate approach to insight can make it more difficult for people support post-ABI is where a young person is to see the need for adjustment in expectations being considered for school disability supports, and/or behaviour.
72 Fourth Annual Roundtable on Intellectual Disability Policy • If rehabilitation remains focused on physical • Assisted community participation (including and / or cognitive gains and fails to move individualised support) may significantly into the realm of social participation this will assist with social integration / community affect the individual’s capacity to generalise participation of people with severe ABI (e.g. their rehabilitation gains to real life (discussed Douglas, Dyson & Foreman, 2006). However further below). unless people sustained their brain injury • Negative community attitudes, ignorance through a road transport or work-related and intolerance are clearly obstacles for all accident availability of funding for such people with disabilities in achieving genuine support is severely limited. As highlighted by community participation. ABI is still very Shut Out, the report of the National Disability much a “hidden disability”. There is limited Strategy consultations, major reform is awareness and understanding, both within needed to achieve an adequate funding pool the general public and parts of the disability for individualised support based on level of sector, about the range of effects / impacts need. of ABI and the nuances of cognitive and behavioural disability that may be associated Community Participation for People with with ABI. an ABI • Follow-up studies of people with traumatic Four areas together support community brain injury indicate significant social isolation participation for people with an ABI, and all need and negative effects on relationships for to be in place: people with moderate to severe TBI (Eames • A comprehensive therapeutic rehabilitation et al, 1996; Brzuzy &Speziale, 1997; Olver system that offers the skills and techniques et al, 1996; Winkler, 2002 cited in Sloan, for the re-gaining of capacities lost from an Winkler & Callaway, 2007; also Douglas and ABI. Two factors of particular importance Spellacy, 2000 cited in Douglas, Dyson and are the attitude shown during this phase Foreman, 2006). Cognitive and behavioural (one that provides hope, is realistic but is not effects of ABI (e.g. lack of social awareness, pessimistic, negative and based on a fear of disinhibition / lack of control, aggression) can litigation) and a focus on social skills in the have a profound impact on the mutual social person’s environment; engagement needed for genuine community • ‘Safe places’, from which individuals can participation. venture out from their rehabilitation process, • People with ABI make up a significant to test themselves with their changed identity, proportion of the cohort of younger people capacities and relationship to the world. living in isolated accommodation settings such Frequently this requires peer support, where as residential aged care (RAC) and Supported people with an ABI can find others who Residential Services (SRS) in Victoria. For understand their experience, and can assist in example, of the 105 people initially involved normalising their experience; in the planning process for the ‘My future • Individual steps into the world that require my choice’ initiative, 58% had an ABI support but ultimately need to be ‘self- (Winkler, Sloan & Callaway, 2007). Difficulties directed’, allowing for dignity in risking in achieving community participation are ‘hiccups’ or failures, taking away the protective compounded by this type of accommodation systems and allowing the ‘time it takes’ rather setting. than imposing timelines; • People with ABI are also significantly over- • Building the capacity of the community represented in the prison population. Recent to understand and include people with all work commissioned by Corrections Victoria disabilities. While not explored in this paper, indicates that 60 – 70% of people in correctional this is an essential element in the inclusion of facilities in Victoria have an ABI. It seems that people with all disabilities as full citizens. this is becoming a de facto accommodation service for many people with an ABI. While Supporting community participation for people the highly structured environment may suit with an ABI therefore needs to account for many some people in terms of managing some of the concurrent areas of work. cognitive and behavioural difficulties associated with ABI, release from prison, usually into an Rehabilitation Framework un-structured and un-supported environment, A rehabilitation framework is a key concept in can prove too great a challenge. Re-offending thinking about how people with an ABI get and further imprisonment are often the end re-involved in their communities. This incorporates result. two key ideas: a medical concept involving targeted
Fourth Annual Roundtable on Intellectual Disability Policy 73 allied health support and other ‘therapeutic’ • Addressing post-traumatic responses, in the interventions, and another concept that involves individual and his/her family and carers; ongoing social re-engagement activities. The • Family centred where possible (because family intensive phase after injury, where acute conditions breakdown is a frequent outcome) often require substantial medical interventions, give way to rehabilitative frameworks, and these • Encourages new identity exploration, where to community integration systems, and ultimately previous roles (eg breadwinner, professional to self-management. Maximising opportunity for etc) are unable to be continued. citizenship and community participation, while The ‘provision’ of services to encourage community often incorporating therapy oriented programs, participation may be an essential element in the focuses on re-learning a role in family, community recovery of capacities lost through an ABI. An and location. This is a lifelong process and takes individualised approach to this work recognises place in the ‘real’ world. The process is neither that each person with an ABI will need a tailored linear nor easily predictable, despite the wealth of approach to maximise his/her opportunities. knowledge and research that has been done into However, we are social beings and our identity the recovery of the brain. is in relationship as much as it is individual, and isolation is frequently reported as an outcome for Overall evidence seems to indicate that the people with an ABI. Re-building a life after a life- earlier the introduction of life goals back into changing event like an ABI involves a complexity a person’s routines, rather than goals that are of personal goals and access to peers where only therapeutically-accurate, the better the exploration of a new identity can be safe, and recovery potential. And it is also clear that every where explanations are unnecessary (a particular individual’s recovery process is unique and is 1 challenge for those whose communication or built upon a whole range of pre-injury skills, cognitive capacity has altered significantly as a connections, family supports (or lack of them), and result of the brain injury). is highly aligned to the age when the injury was received (paediatric, juvenile, and adult injuries Some Current Initiatives Encouraging are very different in the way they effect recovery patterns). Community Participation by People with an ABI The rehabilitation framework is not the same as a developmental framework, which has been the While the ABI specific and broader disability basis for much of the development of ‘Disability service system continues to develop, a range of Services’2 although the particular supports engaged initiatives are underway to find environmental and may be similar. It is not adequate to assume organisational ways to allow people with an ABI to steer their own course of social rehabilitation: these two approaches are the same. If effective community participation is the goal, anecdotal • Self advocacy evidence shows that using developmental concepts Brain Injury Matters Inc (BIM) facilitates has not been a success for people with an ABI. It is self-advocacy and community education like squeezing round pegs into square holes. for people living with an Acquired Brain The key features of a rehabilitative approach are: Injury (ABI). BIM aims to help people living with ABI to realise potential for a full life • The restoration of capacities lost at the time within a supportive community and increase of an ABI and acknowledges the person’s pre- community awareness about ABI. BIM has injury identity and experience; links to regional groups including BrainPower • Planning for lifelong improvements in abilities in Port Phillip and WESABI in the Western (no matter how incrementally small); region. • Shaping an encouraging environment, with • Creativity and participation options supplementary aids and tools (eg memory OMABI was a group created at BIM, joining prompts) the ancient meditation mantra OM with the • Addressing the onset of delayed depression acronym for acquired brain injury. It provides (frequently 2-5 years after injury)(Douglas performance and participation opportunities and Spellacy, 2000); using music as a medium. Sessions explore
1 The medical term ‘pre-morbid’ is a technically accurate terminology, but also has unfortunate overtones. Significant factors in rehabilitation after ABI are the capabilities and life goals and achievements prior to injury. These can provide the basis of a strengths-based approach to recovery. However they also present the person with a brain injury/their families with difficult comparisons between what was and what they feel the limitations might be in the future. 2 Under the recent Disability Services Act 2006 in Victoria, the focus of Disability Services in Victoria has intentionally broadened public sector service delivery to incorporate a wider group of disability types including ABI. This has replaced the specifically targeted Intellectually Disabled Persons’ Services Act 1986 and the Disability Services Act 1991, which outlined principles but had ‘fewer safeguards and less regulation of supports and services’ for other disabilities.
74 Fourth Annual Roundtable on Intellectual Disability Policy improvisation where the creative input of service’ models, so that participants can participants is both invited and encouraged in actively participate in the local community the development of new material. close to their homes. Participants assist each Ambient Orchestra, an initiative to provide an other to pursue social and other activities, to artistic program that aligns with the emphasis achieve goals, and to become an integral part placed on self-determination and choice, of their community social inclusion and increased recreational and • ABI Learning and participation group vocational opportunity in The Disability Act This group was established in 2004, using (2006), National Arts and Disability Strategy a community development framework, and The Victorian State Disability Plan 2002- and facilitated through the community 2012. Objectives are: development worker at Hartnett House and – to provide a forum in which individuals are the Neighbour-Ring Coordinator. The group empowered to explore their own artistic has evolved over time and now operates out voice of the Compass Clubhouse in Northcote. It – to promote collaboration and musical meets monthly, and currently has regular awareness between the participants membership of about 30 people. The group does not have dedicated resources, but is – to foster artistic collaboration and social supported through the ABI Services Unit inclusion between participants and artists/ and Melbourne Citymission for basics like musicians from the wider community meeting space, administrative resources and – to provide a results-based opportunity for a meal. participants in working towards presenting The original goal of bringing together people music of enduring quality to the public. with an ABI who are looking for opportunities • ABI Neighbour-Rings beyond accessing services, by providing a Initiated through an innovation grant from the framework for building confidence, re-learning Department of Human Services, this project skills and testing out capacity from a ‘safe’ aimed to look at the feasibility of adapting the base still remains strong. Further goals for Key-Ring model in operation in the UK for the group are self-managed, with facilitation people with an intellectual disability, to the now provided through the Neighbour-Ring needs of people with an ABI. coordinator and the Compass Clubhouse facilitator. The momentum for this initiative came from the experience of case managers in • Compass Clubhouse the Melbourne Citymission ABI Unit, who Piloted using a small philanthropic grant in were increasingly frustrated by the lack of 2006, and the Transport Accident Commission, appropriate accommodation opportunities for and then through a grant by the Lord Mayor’s people with an ABI: fund in 2007/08, this initiative provides a – whose level of support needs meant they more substantial opportunity for people with could not manage safely and independently an ABI to move from support and service with available supports through disability emphasis to developing independence in life services or HACC services, in public goals, with a particular emphasis on ‘work- housing stock, or ordered’ days. Current operation is three days per week, with the following work groups – whose support needs were not prioritised operating: high enough to qualify for the more intensive supported housing models (e.g. – Administration, which includes membership CRU) available through disability services processing, newsletter and event or similar. coordination Many were being forced into unsuitable – Catering group, which provides both aggregate living in SRS and similar in-house meals for members who attend, arrangements that did not provide a and for events such as the recent open day rehabilitative environment or opportunity. held in brain Injury Awareness Week; ‘Neighbour-Rings’ are groups of people with – Gardening group, which now supplies herbs ABI living within easy distance of each other and vegetables for the catering group, and in the community. These people have required also supports skills development substantial support to pursue individual – IT working group which is offering a range of lifestyle choices. The Neighbour-Ring creates opportunities to learn computer skills and partnerships outside of traditional ‘disability also supports the IT system development.
Fourth Annual Roundtable on Intellectual Disability Policy 75 Compass Clubhouse is part of the International There are also a number of broader disability Brain Injury Clubhouse Alliance, which was programs that have been successful in providing founded in 2004, as a collaborative network skills in community engagement and participation of Clubhouses that serves persons with for people with an ABI. These include: brain injury and stroke through the use of the Clubhouse Model. ‘A Clubhouse is a Building Better Lives community of people who have sustained This was established by the Summer Foundation to devastating life altering events and need the ‘change human service policy and practice related support of others who believe that healing is to young people in nursing homes (YPINH)’, possible for all’. utilising a range of strategies to influence health, Sustainable funding remains a challenge, as housing and disability services policy and practice the Clubhouse model does not fit with any related to this target group. of the activities currently funded through • Young People Get Active (YPGA) is a social government (although there are mental support group for people with disabilities health clubhouses in operation elsewhere in who are either living in aged care or at risk Australia). of admission to aged care. The Summer Foundation is working with YPGA to obtain Socio-medical Model for the Care of funding to develop a framework, governance Young People with Severe Acquired structure and partnerships to ensure that the Brain Injury network is directed by people with disabilities This model of partnership has been developed and sustainable. from eleven years of experience of caring for • The Building Better Lives® Ambassador Chris Nolan and eight other young people with workshops aim to engage and support a ABI accommodated in a residential aged care representative group of young Victorians in facility. They are representative of a small but very nursing homes or at risk of admission to vulnerable group of young people, mostly living in nursing home to get involved in systemic nursing homes, who have similarly complex care advocacy needs due to their narrow margin of health. Their care therefore requires specialised knowledge of Leadership Plus health crisis management, together with knowledge The Leadership Program accepts people with a of how the brain responds following severe injury. variety of disabilities who demonstrate through All care needs to be planned, co-ordinated in a selection process that they have leadership partnership with others, including family, and potential. It offers participants the opportunity to put into effect by staff with relevant specialist talk to a cross-section of community leaders, to knowledge and experience. The model in practice hear their frank opinions and concerns, and learn provides an integrated therapeutic, rehabilitative, from their experiences. It allows participants to restorative environment. exchange ideas and work together through a year- In the socio-medical model of partnership people long program. The program is accredited through with severe ABI are regarded primarily as social RMIT TAFE (competencies in 6 Units of the beings. The philosophical underpinning of the Diploma of Community Education) and delivered model comes from the view that we are all persons, jointly with Leadership Plus. not in isolation from each other, but in community. An appropriate environment supports and fosters Conclusion each person’s communal place in the world. The Community participation for people with ABI partnership model allows for staff, people with requires a community with enough awareness severe ABI, families and friends to belong to the about ABI to enable understanding of the one community – it is a reciprocal relationship cognitive and behavioural impacts and required also involving the wider community. adjustments. A social rehabilitation framework Many people with severe ABI are unable to operating within the person’s own environment is articulate their own needs, wishes, dreams and also a key factor. Most importantly, the energy and hopes; they depend on others who know them engagement of people with ABI themselves, both well, to be their ‘proxy’ – not to speak for them in their own re-connection and in creating peer- but to journey with them. Participation in their support opportunities, provide the foundation for ‘care community’ and in the wider community genuine community participation. will necessarily involve active support from an interdisciplinary, fully integrated and non- References hierarchical team. (The ‘What Does Chris Want’ Department of Human Services. (2002). Victorian Group, 2007) State Disability Plan 2002 – 2012. Melbourne:
76 Fourth Annual Roundtable on Intellectual Disability Policy Disability Services Division, Victorian Government of their survivors’ subsequent rehabilitation is Department of Human Services. disgraceful. One medical specialist cannot expect Douglas, J. M., Dyson, M. & Foreman, P. (2006). to service all of the damaged mind’s needs. To be Increasing Leisure Activity Following Severe successful ABI/TBI rehabilitation must remain Traumatic Brain Injury: Does It Make a Difference? multi-disciplinary and must be facilitated to access Brain Impairment, 7(2), 107 – 118. all of the non-traditional medical specialties. Douglas, J. M. & Spellacy, F.J. (2000). Correlates of We are going to need the whole range of allied depression in adults with severe traumatic brain health professionals to rehabilitate our damaged injury and their carers. Brain Injury, 14(1), 71 – 88. brains. Human brains are plastic enough to change and adapt throughout adult life. It National People with Disabilities and Carer can be done; but not without chiropractors, Council. (2009). Shut Out: The Experience of People speech pathologists, physiotherapists, clinical with Disabilities and their Families in Australia. psychologists, occupational therapists, learning Canberra: Department of Families, Housing, disabilities specialists, behavioural optometrists, Community Services and indigenous Affairs. vision therapists, Feldenkrais practitioners, case Sloan, S., Winkler, D. & Callaway, L. (2004). managers and even general practitioners. You are Community Integration Following Severe also going to need the whole-hearted, optimistic Traumatic Brain Injury: Outcomes and Best participation of the injured individual, himself, Practice. Brain Impairment, 5(1), 12 – 29. because he is the only person on this planet who Sloan, S., Winkler, D. & Anson, K. (2007). Long- can change his brain (Doidge, 2007). Brain injury term Outcome Following Traumatic Brain Injury. rehabilitation can be as complex as any human Brain Impairment, 8(3), 251 – 261. being. The ‘What Does Chris Want’ Group. (2007). This presentation describes the impact of the Acquired Brain Injury (ABI): A socio-medical model established medical professions and the various for the care of young people with severe acquired brain allied health professions on one individual’s injury. North Carlton: WDCW remarkable rehabilitation. Winkler, D., Sloan, S., & Callaway, L. (2007). The case: In June 1984 Dr. Janet Stumbo, the local Younger People in Residential Aged Care: Support veterinarian, was pulled all but dead from the needs, preferences and future directions. Melbourne: wreck of her car wrapped around a tree in Tura Summer Foundation Ltd. Beach, New South Wales. No one expected her to survive that night. She did survive. Dr. Stumbo Appendix A was released from Royal Canberra Hospital in Case Study: An ABI perspective September that year totally blind in one eye, partially blind in the other, and in continuous Abstract: Acquired brain injuries (traumatic brain pain, which she was told to expect to suffer for the injuries) change people’s lives beyond recognition. remainder of her life. The case presented here encompasses 25 years in the rehabilitation of one woman who has Not offered rehabilitation by the professionals at reinvented herself to meet all the challenges of the hospital, shut out by her grieving husband, and living with brain injuries successfully. Dr. Stumbo never allowed to return to her home: Dr. Stumbo brings you her story as an example of what is was forced to turn to the opportunities she could possible with motivation and unbiased access to find in her former and future communities of: all the allied health professions. • Clients and friends – for love and support. Introduction: Each and every human brain on • Former classmates from veterinary school in this planet is unique, modified in structure and Melbourne- returning to function by virtue of all of that individual’s experiences and education. One cannot make • work as a veterinary surgeon after six months generalizations about recovery and rehabilitation of supervised trials. from acquired brain injuries. Every individual • The university in California where she earned is different; every brain injury is different; every her first degree course of treatment and the rehabilitation required • Finally returning to Melbourne to live in her is going to be different. last Victorian neighbourhood, across from her The human brain and mind it creates is the own veterinary faculty. most complex thing in the known universe. Neurosurgeons are revered specialists in surgery • Men and women of the Wyndham Rotary of the CNS. They are not interested and often Club have no knowledge of the person attached to that • Toastmasters International members of District particular brain. To allow them to set the course 73.
Fourth Annual Roundtable on Intellectual Disability Policy 77 Discussion accident survivors. The rehabilitation specialist It was two years before she found a chiropractor there suggested she go home and watch TV sit- to relieve her of that headache. Two years before coms to see how people related to each other. She any effective rehabilitation could proceed. Once had to teach him about cortical blindness! Worse Dr. Stumbo started cognitive rehabilitation with a than that the show he thought would be best speech therapist, she drove her own rehabilitation to watch was the Simpson’s – a cartoon about a towards return to veterinary practice. dysfunctional family headed by an alcoholic with brain damage. Unbelievable. Because her life was totally disrupted these rehabilitative efforts and professionals occur in This high functioning, intelligent individual Victoria and the ACT in Australia and California still had to turn to her community for effective and Washington in the United States. A significant rehabilitation. In this new community it was a factor is that this individual kept up with intense Rotary club that came to her rescue. Thinking efforts at her own rehabilitation in spite of her interactive interpersonal skills training would consistently hopeless medical prognoses. From have to be better than watching television she what the neurosurgeon said at that time, it was joined when invited by this group of community- obvious that it had already been determined that minded men. She made this a positive and her brain was too badly damaged to salvage. This successful interaction by being straightforward is the all too common scenario for the majority and willing to pitch in and help them in every of brain injury survivors leaving hospital to face way she could. their savagely altered lives. Any motivation most of these victims may have mustered is crushed by Conclusion their neurosurgeons insisting that they KNOW, It was this mature, intelligent, well-educated no matter what the survivor does, he will not doctor’s former communities that offered her the improve. hope: friendship, love, and chance to work again Starting out ignorant of her need for rehabilitation, that allowed her to recover and return to a useful she had to stumble into it herself. It would take a life. On release from hospital she was nearly remarkable individual with a set of amazing blind and in continuous pain. Now, 25 years later, attitudes to overcome that negativity and pain to seeing 6/6 with each eye, having earned a Master accomplish any kind of rehabilitation. And so it of Science degree, she has successfully created a did. new career as a published writer and speaker. If you want to examine the gory details: the course She returned to Victoria in 1992 to train for and of her rehabilitation is chronicled in Endless pursue a second career more within her present Journey, first edition published in 1998, second capabilities. It was at that time she was sent to edition published in 2006. the CRS. After days of neuropsychological testing the consultant Neuro psychologist confirmed the References: conclusion it had taken her years to arrive at: she was no longer fit for veterinary practice. Doidge, Norman, MD. 2007. Scribe, Melbourne. Her biggest disability at this time was due to Stumbo, Janet A. 2006. Endless Journey, Optometric loss of interpersonal skills – those frontal lobe Extension Program Foundation, Santa Ana, executive processes so often damaged in car California
78 Fourth Annual Roundtable on Intellectual Disability Policy The Pearl in the Middle. intellectual disability who are supported by paid staff. Many of the residents attend segregated A Case Study of Social day centres with community visits (for example Relationships with an shopping, bowling or visiting parks). The move from large institutions to living in the community Individual with a Severe has not automatically resulted in making new friends or social inclusion. Concomitant with Intellectual Disability moving from large congregate care facilities has been the transition from a medical model towards Hilary Johnson, Jacinta Douglas, Christine Bigby a social model of service provision. An essential & Teresa Iacono element of the social model required support staff to accept each person with a disability In an increasing fast paced electronic and celebrates that person’s strengths (O’Brien, communication driven world, people with limited O’Brien, & Mount, 1997). Coles (2001)suggested abilities to communicate maybe isolated and this change has proved the most difficult for staff under resourced. These people, who may have supporting adults with limited communication additional physical and intellectual disabilities, particularly where support staff are providing frequently experience a lack of community opportunities for community engagement. The acceptance. Various pieces of legislation and barriers of segregation and institutionalization policies have been enacted to encourage the still remain for people with severe and profound inclusion of marginalized groups, particularly disabilities; their relationships are usually limited those with disabilities (Department of Health, to family, paid workers and sometimes other 2001; Department of Human Services, 2002; people with intellectual disabilities (Kennedy Lecompt & Mercier, 2007). The drive to strengthen Horner & Newton, 1990). a sense of community belonging is worldwide and some successful approaches such as “involving Social networks for people with severe intellectual all neighbors” to include people with disabilities disabilities are often small in number. Robertson have been demonstrated (Carlson, 2000). There et al (2001)stated those people living in community has been a growing recognition that for people residences had networks with a median of six with disabilities to feel included, there is a need to network members and a range of 0 to 20. For develop and maintain social networks in order to some people their social network was entirely comprised of paid staff. Paid staff have sometimes gain a sense of personal connectedness and being been discounted as being part of a social network part of a community. as their presence, although frequent, has not been People with intellectual disabilities comprise 3% of voluntary. However positive outcomes from staff the population (Wen, 1997) and many experience and client relationships have been reported in the difficulties with communication(Australian research literature. Some paid staff have reported Institute of Health &Welfare, 2003). The more working in the same house for years and enjoying severe the intellectual disability the greater the spending time with residents (Forster & Iacono, likelihood of other associated disabilities such as 2008). In a study by Newton, Olson & Horner limited speech (Arvio & Sillanpää, 2003). People (1995) paid staff members sought to maintain with severe or profound intellectual disabilities fall relationships with residents after leaving the along a spectrum of communication ability, from workplace and visited or took them out regularly. non-symbolic (i.e.unable to use words pictures However social networks that rely solely on or signs), to limited linguistic (i.e., some ability paid workers can be unstable due to a high to combine symbols flexibly) (McLean, Brady, turn over in staff (Hatton, Rose, & Rose, 2004). & McLean, 1996). Even individuals with limited In addition staff members may not always be linguistic skills predominantly use informal good communication partners as they have been means of communication such as body language, reported to demonstrate difficulty in recognizing gesture and facial expression. People with limited non-verbal behaviours (McConkey, Morris, & formal communication are often ignored and Purcell, 1999) and have indicated problems in denied opportunities to participate in community adjusting their communication style to meet the life. In order to communicate effectively, these needs of the people they support (Purcell, Morris, people need good communication partners to & McConkey, 1999). Light (1988)stated the purposes scaffold and support communicative interaction. of communication are to share information, get Until the 1970’s most adults with more severe needs met, to fulfill social etiquette and for social intellectual disability lived in large congregate closeness; however as requests and directions care institutions but are now living in the often dominate support workers interactions the community, often in small group homes. Small social interaction functions of communication group homes comprise 4-6 people with an maybe limited.
Fourth Annual Roundtable on Intellectual Disability Policy 79 The role of communication in contributing to the did not seem to impinge on the closeness of their quality of the relationship is not fully understood relationship. but it is generally recognized that the quality of Dennis (2002) analysed data from focus personal relationships is more important than groups comprised of staff members identified the quantity of relationships (Morgan, Patrick, & as good communication partners. She found Charlton, 1984; Newton, Horner, Ard, LeBaron, that communication partners’ personal beliefs & Sappington, 1994; Newton et al., 1995). The and values in recognising the importance of amount and types of social support provided communication were important to successful in a relationship is indicative of the quality of communication. These partners attributed the relationship. Social support is underpinned their success to having a strong belief in the by a notion of giving and receiving, a concept communication abilities of the person with a of reciprocity that comes from exchange theory disability, a commitment to the person, respect (Wellman, 1981). The role of reciprocity in for idiosyncratic ways of communicating, an relationships has not been extensively explored awareness of their own personal attributes and in the social networks of people with severe limitations, and an ability to change themselves. intellectual disabilities. Robertson et al (2001) in These communication partners embodied the a large study of over 500 people with intellectual tenets of person centred practices. disabilities stated it was unusual for these adults to provide support to others or to demonstrate The research literature does not adequately reciprocity. describe the communication skills of people who are symbolic but non-linguistic: that is, Smaller studies that have taken qualitative approaches to investigating relationships between those who use conventional symbols, such as people with very limited communication and spoken, signed or pictured words, but do not their social network members have begun to combine them in linguistic units. From the limited demonstrate the existence of reciprocity (Bogdan published information on the social network of & Taylor, 1998; Dennis, 2002; Newton et al., 1995). these people it cannot be assumed that their The components that encourage reciprocity in aspirations are the same as for people with milder a relationship has not yet been determined nor intellectual disabilities who have more advanced whether a style or mode of communication maybe communication skills. Advanced communication a facilitator. Bogdan & Taylor (1998)analysed over a skills allow a person to engage in conversational 100 interviews comprising staff family and friends interactions around a diverse range of topics and emphasised an important perspective of seeing which may provide the basis of shared interest for the humanness in people through (1) attributing relationships to develop. Little is known about the thinking to others, (2) seeing individuality in composition of the social networks of individuals others, (3) viewing the other as reciprocating, and who are non-linguistic, the role of communication (4) defining a social place for the other. The authors in those social networks, how relationships emphasised the person centered approach of their are developed and maintained and how social networks members and found this impacted support functions. If community inclusion is an positively on the relationship. They suggested important goal for all citizens then it is imperative accepting, reciprocal relationships were formed to better understand the communication of where the networks members were either family, people with severe intellectual disability and how had religious conviction, believed in the principles social relationships are initiated, maintained and of social justice or became friends through having developed. fun together (Taylor & Bogdan, 1989) This paper describes the communication of an Newton et al. (1995) confirmed the ability of people adult with a severe intellectual disability who is with severe intellectual disability to participate a symbolic but non-linguistic communicator and in reciprocal relationships, through interviews how her communication is perceived by members with fourteen people who chose to be ongoing of her social network. In doing so it seeks to social network members for people with limited answer these research questions; (1) what strategies communication skills. Some social network are needed to identify preferred social network members discussed how they felt appreciated members? (2) What modes of communication does by the person with an intellectual disability. One the adult with a severe intellectual disability use? member commented that she could unburden (3) In what way does the ability of the network herself because her friend had “no compulsion members to interpret the communication of the to fix things” (p. 389). The authors discussed the adult with a severe intellectual disability determine fact that that network members commented on their relationship? This data was collected as part the differences in communication modes, but this of larger PhD study.
80 Fourth Annual Roundtable on Intellectual Disability Policy Method data (interviews and field notes) were entered into Nvivo 8, coded line-by-line and examined Design for invivo codes (descriptive terms used by As little is known about the communication and interviewees). These codes were then re-examined social network of adults who are non-linguistic, in a process of focused coding as the data from a qualitative approach to data collection and each interview and field notes were compared analysis was taken. Qualitative methodologies and contrasted. Saturation was reached when no are appropriate to use when trying to understand new categories emerged. As data collection and an area about which little is known (Morse analysis is in progress for other participants the & Richards, 2004; Strauss & Corbin, 1990). development of a theory is not yet complete. Grounded theory methodology was chosen as it provides a way of understanding complex Ethical Approval human phenomena, with the resulting theory Ethical approval for the study was granted through grounded in the issues that people perceive as La Trobe University’s Human Ethics Research important in their lives(Mills, Bonner, & Francis, Committee and Monash University’s Standing 2006). Grounded theory also represents a rigorous Committee on Ethics in Research Involving approach to extracting meaning from participants’ Humans. Informed consent was obtained on behalf experiences (Schwandt, 2007). of the participants with intellectual disability from Glaser & Strauss (1967) originally developed the their next of kin, and directly for the participating grounded theory approach to collect and analyse support workers and participant’s family. data that incorporated a symbolic interaction framework. The focus of symbolic interaction is on Participants understanding the shared meanings that emerge The participants included a central participant and from interactions. Strauss and Corbin (1990) further that person’s social network. Sandra (pseudonym) developed grounded theory analysis by utilizing was identified as having a severe intellectual detailed coding systems (Charmaz, 2006). A central disability and being a symbolic but non-linguistic feature of grounded theory is that data collection communicator by a staff member from a Day and analysis occur simultaneously, where the service in Melbourne. A consent form to participate data are compared and contrasted using a constant in the research was completed by her parents. The comparative method. In addition, grounded selection criteria for the central participant were theorists emphasise the centrality of theoretical being aged over 18 years with a severe intellectual sensitivity: that is, the way data are handled, coded disability, independently ambulant, living at home or questioned is about developing theory, which or in a non-government group home and having questions and opens up new possibilities. Data contact with one or more family members. The continue to be collected and analysed until no latter criteria ensured the participant would have new categories or concepts can be garnered and long term contact with some unpaid members saturation is reached. Charmaz, (2005), formerly a in the social network. Communication criteria student of both Glaser and Strauss, has maintained included adequate hearing for speech ( to ensure the basic tenets of grounded theory but differed any difficulties with understanding speech were from Glaser by emphasising the importance of due to cognitive issues not a hearing impairment), a constructivist approach. The constructivist an ability to recognise photos and pictures, the approach acknowledges the importance of a ability to expressively communicate with less than subjective reality and the role of the researcher 50 words/signs and to be non-linguistic (unable to in developing meanings. Researchers who have flexibly combine symbols). taken a constructivist grounded theory approach The definition of what constitutes a social network have examined how people establish meanings, member in the research literature have included why they establish those meanings; furthermore (a) people who are important or really liked by they have included the researcher as an integral the central participant (Forrester-Jones, Jones, & part of the process, a co–producer and verifier of Heason, 2004; Kennedy, Horner, & Newton, 1990) meaning (Charmaz, 2000). or considered important right now (Antonucci, A grounded theory approach that is based on 1986); (b) those who have had recent contact, such symbolic interaction framework and includes a as seen in the last week (Renblad, 2002) or two constructivist approach is suitable for research weeks (Newton, personal communication, August in the area of communication where little is 7, 2007) or been in contact in the last month (2001); known (Skeat & Perry, 2008). The data presented or (c) people who have a special bond or provide in this paper consists of observations with one social support (Krauss & Erickson, 1988; Krauss, participant and her social network compared and Seltzer, & Goodman, 1992). Some social networks contrasted with information from interviews. The also have exclusion criteria, such as excluding
Fourth Annual Roundtable on Intellectual Disability Policy 81 paid staff (Dagnan & Ruddick, 1997). For this Participant observation occurred in the lunch research the author adopted four qualifiers for room, when she was cooking in the kitchen, people to be termed social network members: (1) and during programme time in her group room. people whom Sandra could name when not in her Engagement with her depended on her mood presence, (2) people with whom interactions were and interest in the interaction. A total of 10 hours positive and in which Sandra showed pleasure, was spent observing on 13 separate occasions. (3) people with whom an interaction/activity had In addition a video of a program in which she lasted more than fifteen minutes (Newton, 2007 participated was viewed. personal communication), and (4) people who had A meeting was organised at her home where known her for several years. Each person needed the study was discussed with Sandra and her to meet a minimum of two criteria to be deemed a parents. A worker from a behaviour intervention social network member. support team also attended. Her parents provided In addition to observing interactions the researcher reports from an educational and developmental asked the family and day centre staff to identify psychologist when Sandra was 12-years-old. The people important to her. The family identified reports were based on observation, interviews one ex-support worker who was in occasional and formal assessment and concluded she had contact (a couple of times a year) with Sandra. a severe intellectual disability and a moderate However this person was only available for a Autism Spectrum Disorder (ASD). Sandra was phone interview. This person, nominated as a also diagnosed with epilepsy when 3- years-old friend and who met criteria was the only person and still experiences seizures. not interviewed or observed with Sandra. Some Her parents outlined her weekly timetable in of the Day support workers suggested peers order for the researcher to organise to attend who liked Sandra or with whom she had shown her activities and meet frequent communication pleasure. There were only two peers who met the partners. Over the last year Sandra had been criteria of a social network member. reluctant to leave the house and all social activities were house based. A total of 21 hours were Procedure spent observing Sandra at home on 13 separate The initial meeting with Sandra occurred in the occasions. At home she spent the majority of her Day service where the researcher was introduced time watching TV –either in the front room, or to her while Sandra was making a sandwich for in the back room located in the kitchen. She also her lunch with a disability support worker (DSW) had a TV in her bedroom but rarely chose to go in the kitchen. Once lunch was made, she was in there. observed during interactions in the lunch room. Observations occurred over a five month period. After lunch an attempt was made to engage her in During that time members of her social network completing a formal communication assessment- were identified and interviewed. The aim of the the Peabody Picture Vocabulary Test – III (Dunn interviews was to supplement the information & Dunn, 1997) – but after pointing correctly to a gained through the participant observations couple of test items she lost interest. Subsequent and understand the social network member’s attempts received a similar response and the perception of Sandra and their relationship. test was abandoned. Her program file contained Interviews ranged from ½ an hour to 1.25 hours and copy of the Triple C (Bloomberg & West, 1999) utilised an unstructured format. The interviews that had been completed two years previously opened with the question “Could you tell me while she transitioned from school to the Day about your relationship with Sandra and how service. The assessment indicated she was at an communication in this relationship occurs?” advanced symbolic stage of communication. This assessment and the initial observations indicated The interviews were digitally recorded and later Sandra reached the criteria criterion of being non- transcribed. One of the interviewees who had linguistic for inclusion the study. A subsequent an intellectual disability had difficulty with the discussion with the program manager identified unstructured format and pictures were used to Sandra’s timetable and the activities in which she clarify responses and keep attention to task. participated. As Sandra refused to leave the centre Individual photos of social network members who for community based activities all programmes were interviewed were presented to Sandra and were centre based. She was willing to participate her reactions transcribed. in only two centre based activities and when not in one of these programmes she sat in the Results and Discussion lunch room which was located outside the room After analyzing the data a time was set aside to in which she was based. Here she had a view of provide feedback to the Day Support Workers everyone moving around the centre and there (DSWs) and family (during the regular staff were many opportunities for interaction. meeting time at the end of a day). A time was
82 Fourth Annual Roundtable on Intellectual Disability Policy also offered to the parents during which Home used by one of the DSW when asked to describe Support Workers (HSWs), family and Sandra Sandra in one word. Sometimes Sandra’s anxiety could be involved. A person centred approach appeared to be overwhelming and she would seek was utilised that looked at portraying Sandra’s others to help. Here she became child-like reaching strengths and abilities. This approach emphasised out for comfort and was visibly distressed. Her the different roles she played and how she used anxiety was usually communicated through her her communication skills and engaged others. body language, facial expression speech and Sandra’s communication included the use of tone of voice. As her anxiety levels varied from facial expression, body language, touch, objects, demonstrating her vulnerability and desiring gesture, key word signs and spoken words and comfort to lashing out when others came close, these modes varied in frequency across the roles. social network members commented on how this Her communication modes fulfilled three main was not always easy to interpret or understand. purposes. These were to get her needs met, to share “So there things where she sort of does this, and information (mostly about other people) and for I mean a lot of people will look at that and get social interaction and social closeness. Analysis of confused because she sort of tenses up and shakes the data suggested three major aspects as to who her hands and I know immediately that that Sandra was, which were captured in the roles of means she’s anxious or a bit worried, that kind of the ‘ lioness’, ‘anxious child’ and ‘entertainer’. The stuff and a lot of other people that haven’t met her term lioness was an in vivo code suggested by a very often sort of get a bit (family) DSW but underpinned in transcripts of interviews with terms such as “track” and “lunge”. The She does get very anxious and, for reasons that anxious child was observed by the researcher at probably you’re very aware of too. You want to the day centre and the term “anxious” appeared minimise that anxiety. And sometimes because repeatedly in the interviews. The entertainer role her dad was away, I think that that might have arose from the enjoyable times experienced by all added to the anxiety. But she was constantly in her network. repeating, “Mum, Dad, home, home,” you know like, and she does that quite often.” (HSW) As a lioness she exerted control on her personal belongings, her personal space and her The words she used when she was anxious were relationships. She communicated this control sometimes difficult to understand and sounded predominantly through informal means such as like she was using a language other than English. the use of objects, her body movements, facial These were sometimes used in fun situations but expressions and touch. One of the objects which also present when anxious and could indicate an was central to many of her interactions at home, escalation of her anxiety. One of the DSWs noted was the TV. her mood could be complex to interpret and suggested a need to intervene. “It can also be pretty frustrating because she occasionally swaps channels, turns the volume “I don’t know whether it’s anxiety or something I down, turns the volume up. I mean she likes to, I don’t know what’s going on with her, but um yeah think that’s sort of a bit of a power thing with her I just try to redirect her into thinking something (family)” else she goes “farfar” bizarre gibberish words she says.” (DSW) Sometimes she used words such as “wait” (which meant stop, don’t do anything) and “go away” Although Sandra’s behaviour could be both used to terminate or signify impending anger. puzzling and frightening, network members Sometimes she would also say “hand hand” as if commented on the fun they could have with Sandra. she wanted to hold it but as you came close she Sandra’s third role was that of an entertainer. In would sometimes reach out to strangle your neck this role she played a mimic, copying accurately .Her powerful lioness presence was evident across peoples’ facial expressions and subtle nuances, both environments. Her social network partners she would repeat words, sometimes sounding observed her facial expression and body language like a broken record, she could be outrageous and carefully while noting her speech and tone of outgoing, dancing energetically. Although she voice. At the Day centre those who did not know used speech, her range of facial expressions and her well avoided interactions. body language conveyed powerful messages. She reached out to people by mimicking them and “She’s a private person and um she has her reasons playing games. One of the support workers noted, if she doesn’t want you in her space, if she wants “Well I touch my lips a lot and I haven’t noticed to bring you into her space. Yeah we have a fairly that I do that and now every time every Tuesday good sort of um relationship but I am always a bit Sandra is going “mmm” and that’s exactly what wary.” (DSW) I do.”(HSW) This ability to mimic and share was Her need to control appeared to be also driven seen as a positive skill and was valued by network by a high level of anxiety. The word anxious was members. Mimicking was often relationship
Fourth Annual Roundtable on Intellectual Disability Policy 83 building as the network members felt Sandra was very positively and robust discussion ensued individualising her responses. Mimicking also with suggested strategies to increase and improve provided some safe ground to interact. interaction. These suggestions included increasing “And also more on a sort of one to one level of possibilities for short interactions and capitalising communication, because you’re communicating on her interest in certain people by assisting her to through laughing and watching something help at the Reception desk so she could be part of together as opposed to try and have direct dialogue everyone arriving and/or leaving the centre. One which is impossible. So it probably makes her feel DSW, although agreeing with suggested strategies, a little bit better because you don’t need to have stated he could not greet her several times a a thousand words, you can just laugh and make day as greeting a person once was all that was faces.” ( family) necessary. A few staff members acknowledged the identification of her roles helped them understand Mimicking also included repeating words and her behaviour, particularly the lioness role. One these could result in enjoyable interactions. Her staff member reported how the presentation had father explained helped her to really know Sandra. “So if I’m here and she wants attention it’ll be “Dad, Dad, Dad” and it really won’t stop until Social network you go up there, and she’ll say “sit, sit, sit” and Sandra’s social network was identified using the you sit there for a while. Then she’ll say “talk, previously described criteria. In addition photos talk, talk”. So you sit down and say “what do you were taken of the fourteen members of Sandra’s want to talk about” and she’ll go “talk”, and you social network. The photos were intended to go “what do you want to talk about and she’ll go provide a method by which Sandra could indicate “talk”. I say “do you want to talk about school” preferences of people in her social network and and then I’ll say something like “Katie’s a good confirm or deny the proxy report. The social friend” and she’ll go “friend.” network identified by the researcher was either Sandra’s behaviour was also seen as outrageous through observation of Sandra and her interactions and defying convention. A HSW commented and/or suggested by people who knew Sandra on the enjoyment she experienced witnessing well. The network consisted of four immediate Sandra’s behaviour. family members, three HSWs, five DSWs and “She does what we would all love to be able to do two peers with an intellectual disability. Two and that is punch the person in the face who just additional peers were suggested to be people stole your car park, or take your pants off when Sandra liked but she showed very little interest you’re hot and just sit there and not give a toss, in either of them. The photos of family and HSWs stick your finger up your nose or scratch your were presented to Sandra in her home and she backside in public or your front bits or whatever appeared delighted, as demonstrated by going … she does and then things like when she does through the photos and naming people excitedly. dancing and then she comes home she just cracks Most of Sandra’s spoken words consisted of proper me up.” names and she often named people when she saw them or heard their name. The next week photos of Sandra’s limited verbal communication did not DSWs and peers were added. She was again very limit her interaction with people. However reading excited. After a couple of days she stopped taking her mood and understanding her communication the photos to the Day centre. However her family was vital to the safety of the network member reported she brought them out at home to show and affected the mode and frequency of their strangers and friends of her brother. As she went interactions. A family member stated she was the through these photos the warmth in her tone of “barometer of the household” and on entering the voice indicated those people she appreciated most. house visitors would be warned when the lioness After a few weeks she stopped naming all the role was active. Social network partners learned photos and concentrated on a few, her parents, her to read the nuances in her behaviour and react brother, one home support worker and sometimes accordingly. her two peers. This activity suggested these six “its easy to be a little bit wary of Sandra I suppose, network members were the ones with whom she and I started out that way. So I started making felt the closest. sure I got a smile out of her and a sort of friendly Her home social network was relatively stable. response before I would approach her.” (DSW) Three of the family members lived with Sandra The Day Service presentation was attended by and had known her all her life while the fourth twelve support staff and a program manager. (Sandra’s brother’s partner) had known her for Only three of her social network DSWs were there less than ten years. The HSWs had known her as others were driving buses, absent from work from less than one year to over ten years, one of or doing other tasks. All who attended responded them having met her when she was small and
84 Fourth Annual Roundtable on Intellectual Disability Policy then worked with her most of her life and another “When she’s not being a pain in the arse she having worked with her when younger, left to can really brighten up a room. Like sometimes have a baby and then returned. The DSWs had when she comes home from school and she’s been known her from one year to three years and her doing dancing or disco or whatever, probably peers from less than six months to three years. popping around and I’ll come out and she’d be Although some support workers stated Sandra lying on the floor trying to do a dance move or stretching or you’ll come out and she’ll be sort of preferred males only eight of her network were listening. She’ll be sort of thundering backwards male. Eight of her network saw her daily so and forwards and it’s just, she has a real freedom.” interacted frequently. The social network was (family) dense with most people knowing of each other but only Sandra knew everyone. The DSWs at Her ability to demonstrate love was identified the centre did not know the HSWs and not all most clearly by family members. of the DSWs knew the parents. One of the DSWs “I just love everything about her. I love her sense was a bus driver and had briefly met some of the of humour. I love her affection towards me. I just HSWs. love the way she looks, you know, how she looks at Of the two peers, one had only known her for a me sometimes.” (family) few months and was very part-time. He stated Her mother recounted an incident to emphasise he was merely helping the staff with lunches and the delight she had in her daughter. It concerned showed some concern about Sandra’s aggressive an integration aide (Ben), Sandra had had at behaviour to others. From his interview responses school for several years. Ben had a partner, Sue it appeared Sandra’s interest in him was not and they would visit Sandra. Sandra used to walk reciprocated. The other peer who had known with them but always between them, Ben then Sandra for a few years seemed to enjoy being with Sandra and then Sue. “She’s really telling him her. Sitting with Sandra entailed sitting in an open what your place is, this is how I am, the pearl in lunch room in the day centre where there was a the middle.” lot of interaction and this may have increased the Support workers from the home and day centre enjoyment factor. His communication was difficult reported feeling personally satisfied working with to understand but he seemed to enjoy talking and Sandra. Partly it was the challenge of supporting Sandra did not interrupt. When asked what he Sandra and a feeling of achievement when mutual liked about Sandra he responded “just talking”. respect was accorded. The staff supported peer interaction with Sandra by giving each of the peers a role, such as helping “So yeah, I really find sitting back and watching out with her lunch. This support meant that the her how she does look at certain people or how peers received additional positive attention from she responds to the way people talk to her and all the staff. Sandra could sometimes be encouraged that and yeah I do get something out of her. I do to join in a group activity if one of the two peers actually enjoy the shift.” (HSW) also attended. Another said “Like when we’re dancing and stuff it makes me feel that I’ve made a difference to Although Sandra had limited communication and her day” (HSW). A third HSW commented on the could physically attack people, people were still positive response she received from Sandra on attracted to her and reciprocal social support was showing her new baby “she prefers males. So to identified from analysing the network member be able to be like that with her is actually I guess interviews. Individuals in the network reported quite a privilege to think I’ve actually broken receiving from Sandra a feeling of enjoying her down that stereotype.” company, love, personal satisfaction, and feeling fortunate. Taylor & Bogdan, (1998) considered However the challenge of supporting Sandra the first three elements to be part of an accepting also made some of the network reflect on their relationship. The first two elements – enjoying own lives and commented on how grateful they her company and receiving love – were seen most were not to have this challenge (a child with a often in the home environment where Sandra disability) in their own family life. appeared the most comfortable. “There with the grace of God goes I, I have two The feeling of having fun and enjoying keeping sons, I have five grandchildren and I look at her company emerged from Sandra’s ability and the others and I think well it was only one to entertain and play games whether it was gene that perhaps caused her to be this way, it mimicking another’s movements, repetitive word could have been my kids. So I consider that I am games, dancing wildly or copying the wrestling very blessed in that respect.” (DSW) on the TV. Her sense of humour and fun was It also gives me a reality check that how blessed infectious. I actually am to have a child of my own and how
Fourth Annual Roundtable on Intellectual Disability Policy 85 very lucky I am to do that. But it also you know successful interactions with each individual person because I work with lots of people’s other children with whom they work, and may be unaware of and it just gives me a really good reality check their own skills, or that their modes of interaction that, you know, some people do it really tough and differs from those of other staff members. Sharing have to strive really hard”.(HSW) knowledge about the constituents of successful social interaction with an individual is dependent Summary and Implications on the opportunity for discussion between network Facilitating community inclusion with people members from different interactional contexts. As with severe intellectual disabilities presents successful interactions underpin possibilities for relationships, it seems critical to take the time to with complex issues. Finlay, Antaki, Walton & analyse their nature. This requires opportunities Stribling (2007) stated “inclusion is not just being to share knowledge and reflect on interactional in public spaces but is also about respectful, practices which may also produce more and mutual exchanges between individuals, which varied opportunities for social engagement. In are rewarding for both parties” (p.532). This services where there is turnover of staff, or limited statement suggests developing an individual’s time for regular staff meetings, there is a danger supportive social network can assist with the that knowledge about individuals’ interaction processes of inclusions. This case study of Sandra preferences may be lost when network members highlights the centrality of communication issues leave. in both the development of a social network and understanding how it is sustained. Sandra Understanding and learning to interact with is an adult with a number of labels, severe a person with a severe intellectual disability intellectual disability, autism spectrum disorder, requires time, relinquishment of control, a focus seizure disorder, non-linguistic communicator on their interests and a commitment to the and challenging behaviour. Beyond the labels is a interaction. The type of communication exchanges woman whose spirit, actions and emotions engage that are satisfying for people with a severe others. Currently Sandra has chosen to limit the intellectual disability are mainly social exchanges. public spaces in which she participates in order to Where support workers focus on pursuing feel secure but has clearly initiated maintained and social interactions, they can develop enjoyable developed reciprocal relationships with family, relationships and find personal satisfaction in support worker and peers. their work. Although service co-ordinators may try to match staff with particular individuals, Her network, excluding family, consists group programs may mitigate away from this. predominantly of paid and domain specific There is a considerable focus in day services on relationships. She is seen by those who know programmed activities; however the elements that her as an attractive person and one with whom contribute to having a good day are more likely to interaction can be challenging, but is valued. Her be embedded in the interactions between network relationships at home are the most stable. Two of members. These interactions are more important her home support workers have supported her for per se than the programmed activities, although several years, both returning after work breaks. the activity does provide a joint focus within One HSW reported she could not see a time in her which to share time. life without Sandra being present. This same HSW Spending time in the community may not be the also attended some family functions primarily best option for all people with an intellectual driven by her interest and connection with the disability. People like Sandra clearly benefit from family. This commitment to support the family frequent and brief interactions with a range of was also echoed by some DSWs. known people in secure and more predictable A consistent approach by the people in a network environments. Given that paid and family network can facilitate familiar routines, lessens anxiety and members find satisfaction in relationships with promotes opportunities for interaction. Attending people like Sandra there is no reason to suggest a day service allows a large number of possible that others may not also enjoy their company. interaction opportunities, often brief and repeated. This opens up possibilities for extending peoples’ Some but clearly not all of these may result in the networks by introducing unpaid community inclusion of new members in a person’s network. members which could occur in familiar rather Conversations are often not conventional in form than unknown community environments. The but they provide satisfying interactions for both lessons learned from getting to know Sandra parties. It is expected that experienced staff will can be applied to extending her network and facilitate interactions between new staff and the that of others with severe intellectual disability. people they support as well as facilitating peer Central to successful interaction with Sandra is interactions between them. However staff do an understanding of her communication, the not routinely share the way they co-construct roles she takes and ways she chooses to interact.
86 Fourth Annual Roundtable on Intellectual Disability Policy Existing networks members, if given the chance (Second ed., pp. 509-535). Thousand Oaks: Sage to reflect on their interactional knowledge are an publications Ltd. important of such information that can be shared Charmaz, K. (2005). Grounded theory in the 21st with new potential network members. Critical century: applications for advancing social justice to building new relationships is providing new studies. In N. K. Denzin & Y. S. Lincoln (Eds.), The network members with an understanding of who sage handbook of qualitative research (3rd ed., pp. 507- the person is and ways to support communication 535). Thousand Oaks: Sage Publications from which they can develop and derive their own unique positive interactions. Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative analysis. London: Current networks are often domain specific e.g Sage Publications Ltd. home support workers, day support workers, and Coles, J. (2001). The social model of disability: what attempts could be made to strengthen the support does it mean for practice in services for people for an individual outside the family by setting with a learning disability. Disability and Society, 16, up circles of support (Falvey, Forest, Pearpoint, 501 -510. & Rosenberg, 1994). Circles of support include people who know the person with a disability Dagnan, D., & Ruddick, L. (1997). The social well but also offer opportunities for introducing networks of older people with learning disabilities new people into the network who may not have living in staffed community based homes. British a paid relationship. This study provides some Journal of Developmental Disabilities, 43, 43-53. important insights into how this process might Dennis, R. (2002). Nonverbal Narratives: Listening be supported. 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88 Fourth Annual Roundtable on Intellectual Disability Policy More Than Just Places – life of the community – socially, economically, It’s About People culturally, politically and spiritual. With the increasing focus on place based disadvantage the risk is that the disadvantage Daniel Leighton & Ralph Hampson faced by people with an intellectual disability who live in what are deemed ‘advantaged communities’ Introduction will be given less attention or perhaps ignored. The Victorian Government is committed to Jewish Care Victoria (JCV) fully supports the developing a stronger and more inclusive Victorian government commitment in seeking to community. However, changes to the A Fairer create ‘strong communities’. As a leading provider Victoria policies over the past 5 years have made that of disability services, focused on supporting the goal more difficult for people with an intellectual Jewish community, we are recognised as being at disability as the policy focuses on place based the cutting edge of service delivery. Jewish Care’s disadvantage rather than a recognition that for services include individual support, transition people with an intellectual disability disadvantage for young adults, schools integration, respite continues to exist in all communities. and supported housing options for adults with In March 2005, the Victorian Government disabilities; but as a service provider how do we released a position paper, Challenges in Addressing engage in a “coordinated approach involving all levels Disadvantage in Victoria. This paper outlined the of government, non-government agencies and local nature, extent and distribution of disadvantage communities” to create and fund services to support in Victoria. It identified the barriers and people (as well as provide affordable housing) in circumstances that prevent individuals from fully places that aren’t experiencing disadvantage? JCV participating in social and economic life. This led is acutely aware of the need to work in partnership to support for a ‘coordinated approach involving all with our service users so that wherever possible levels of government, non-government agencies and they can be engaged with mainstream services local communities’. which are located in the community in which they live. Within the current policy context this In the first A Fairer Victoria statement, the is challenging, and this paper explores the issues Government committed to investing $119.5 million JCV has and continues to face. to make Victoria: … a more accessible place for people with a Community Engagement disability, improve housing and respite options, Verdonschot, de Witte, Reichrath, Buntinx and better protect the rights and interests of people Curfs (2009) reviewed the literature to identify with a disability and create more flexible support what was known about community participation packages to give people with a disability maximum of people with an intellectual disability. Their choice and opportunity in the way they live their findings provide a useful backdrop for later lives. discussion. Reviewing the literature for a 10 year While the stated policy of the Victorian period from 1996-2006 they identified twenty government is to make the state a more accessible three quantitative studies that met their criteria for place for people with a disability, no specific inclusion. It was clear from their review that there funds were allocated to achieve this goal. Rather is little known about community participation of commitments were made totalling $75.2million people with ID. over four years to “continue to lead the way in building Their review concluded: stronger communities, targeting our investment to help communities with high levels of disadvantage”. The … one conclusion can consistently be drawn from focus of the investment was on disadvantaged the review: people with ID living in community place based communities with the goal being settings participate more than people living in to create strong, active, confident and resilient segregated setting, but their participation level communities that provide a network of support to is still much lower than non-disabled people the people who live there, and also have a voice in (Verdonschot et al, 2009:315). the matters that really matter to the community. Interestingly they also reported that the People with an intellectual disability are assumed studies reviewed varied in their definitions of to be included in this community development ‘community participation’, that most did not locate approach. The Victorian State Disability Plan 2002- the work within a clear conceptual framework 2012 has as one of its primary goals: and methodological quality and methods varied … strengthening communities so that people greatly across the studies. with a disability have the same opportunities as One of the key challenges faced by service all other citizen of Victoria to participate in the providers wishing to support people with an
Fourth Annual Roundtable on Intellectual Disability Policy 89 intellectual disability in the community is the community. Indeed, in opposition to the current lack of a durable and sizeable personal social practices of A Fairer Victoria, one might argue that network. Utilising the domains of the International we must invest in areas where there is greater Classification of Functioning, Disability and social cohesion, as it can be argued that these Health, the average number of people in the areas have the necessary precursors of existing social network of someone with an ID appears to community networks, infrastructure, engagement be 3.1, with one of these being a member of staff. and volunteerism available for mobilisation, and In reviewing the literature, Clement and Bigby that a smaller investment is required to reorient (2008:264) note: these existing assets for use in supporting people with an intellectual disability. People with intellectual disabilities, whether they have a history of institutionalisation or The following two case studies illustrate some not, typically have small and highly restricted of the work that JCV has undertaken to increase social networks characterised by interactions with opportunities for people with intellectual co-residents or co-participants in day programs, disabilities to participate in their local community. immediate family members, and service workers The first case study focuses on recreational services who are paid to support them. and the second on housing options. Exploring how the Victorian Government policy ‘building inclusive communities’ the authors Case Study 1: Disability Services Funded followed the lives of five people with severe ID Recreational Respite and Building who had been relocated from institutional care Inclusive Communities: Are they to a new group home in the community. The Incompatible? study demonstrated that the group home created The Victorian Department of Human Services a community presence, rather than participation (DHS) funds a number of organisations across with the non-disabled community. The authors the state to provide recreational respite activities. note that unless staff and families are convinced of These are defined in the policy and funding the veracity of this goal they may not work towards guidelines as “a range of day and overnight achieving it. Further they note that the debates supports for people living with a disability and regarding the definition and conceptualisation of their families and carers. It aims to support and ‘inclusion’ are ongoing and multifaceted. strengthen family relationships and includes: A study undertaken by Alphen, Dijker, can den • Support within the extended family or Borne and Curfs (2009:750) considered the opinions friendship network of 39 people with ID who lived in neighbourhood • Camps, holidays or weekends away housing facilities. The authors identified five key themes in relation to neighbouring: superficial • Support in an alternative family environment neighbouring; involved neighbouring; feeling • Facility based overnight stays at home; the organisation; and formalisation • Weekend and holiday community based day of relationships; and apprehension towards activities interaction. They report that the experiences of neighbouring are much like those of non-ID • Social groups and evening activities. people, most knew some neighbours and greeted While regularly revised, the form and intent them, and some exchanged favours. There were a remains substantively similar to the guidelines distinct group who seemed relatively unaware of issued in 2003. These guidelines do not seek their neighbours. One interesting result was that to encourage innovative practices that would “neighbouring that moved beyond the superficial connect individuals into their local communities more likely involved volunteers and nearby living and build more inclusive communities. DHS staff (753).” The authors conclude that there also continues to fund specialist organisations to bring needs to be more comparison between non-ID together of people with a disability to provide an people and people with ID to understand how activity that could be obtained from many other each interacts with neighbours. providers within the community, such as libraries, Therefore, if we are to achieve any measure of neighbourhood houses, sporting and recreational success, we must, at an individual level, place groups and clubs. By not seeking to link with these a greater emphasis on building the social skills established community services, the provision of and networks of people with an intellectual recreational opportunities continues to be reliant disability. At the community perspective we must on family, friends and paid disability support engage community members to overcome any organisations. unfounded myths, fears, and reservations and In contrast, Jewish Care has embarked on a new support them to engage with people with a path, setting itself the goal of not creating any disability as they would any other member of the specialist recreational respite activity by 2014.
90 Fourth Annual Roundtable on Intellectual Disability Policy Currently, Jewish Care provides 5 recreational and a formal Memorandum of Understanding was respite groups – each of which meets fortnightly developed and signed by all parties. and these are streamed according to age and With an agreement in place, and a broad support levels of the participants. Some of these understanding of its purpose, Jewish Care staff, groups trace their beginnings back to the late in conjunction with Access, engaged with a group 1970s. People complete half yearly planning to of parents who were already renting a gym for 2 determine the activities. Over the past three years hours one night a week and had approximately 10 we have been examining ways of increasing the teenagers with an intellectual disability playing a number of groups available. game of basketball. This group had been established In seeking to provide additional respite JCV by parents looking to create some opportunities identified the needs, scope and the demography for their children and the group was supported of the community. An analysis of current respite by two siblings and their friends. Meetings were practice highlighted that respite was currently held with the families to explore the possibility being provided in one of two ways; either of their children playing for Maccabi. The parents informally via friends and families; or formally were excited by this opportunity and saw it as via paid disability support workers. Therefore, in normalising and encouraging other opportunities seeking to provide additional support in line with for their children. the vision of the state plan, increasing the number However, even with broad support, there were a of disability support workers to continue more number of issues to overcome, including: of the same was immediately excluded, and the • Transferring responsibility for the team to the following two options considered: basketball club; • Increase social networks of individuals and / • Locating venues and times that were suitable or their families; and to parents while also matching training times • Engage with other recreational providers with other groups of teenagers and locating and support them to include people with a spare time on the courts; disability. • Encouraging the siblings to undertake Establishing a program based around family coaching training and paying for it, so as to social networks was not considered viable given build the skills of the team to prepare them for the resource intensity required. As a result of this competition; process Jewish Care sought to engage with local • Locating suitable tournaments and recreational providers to build their skills and competitions; strengths so that they would be better resourced to support people with an intellectual disability. • Supporting parents to allow their children to compete competitively (so as to provide opportunities to build friendships); The basketball team • Moving training venue (and creating transport Maccabi Victoria is the largest Jewish organisation issues) in locating a venue within a particular in Australia with 24 sporting and recreational DHS region to satisfy their requirements for clubs, over 4,200 active playing members, more activities to be provided within the region; than 600 regular volunteers and in total 11,000 members, parents, family and friends. The clubs • Funding monthly advisory committee range from tennis, basketball and swimming meetings; through to Active Living walking groups, snooker But there were also successes: and lawn bowls. Initially, meetings were set up • Team growing from 10 to 18 people regularly with the President and the Chief Executive Officer, attending training; seeking their support to reach out to the individual clubs to support the inclusion of people with • Basketball club sponsoring uniforms for all a disability. Following in principle agreements, team members; correspondence formally seeking their assistance • Obtaining sponsorship from local bridge was sent to the Maccabi Victoria board. The board club. agreed to our request and established a sub Support through the partnership has now spread committee of the board to meet with Jewish Care to involvement for people with a disability in four and develop a more detailed plan. clubs (walking group, basketball, lawn bowls and A working group was established with three table tennis). There is also interest from the football representatives from Jewish Care, three form and soccer clubs. JCV has secured discounted Maccabi and two members of Access, a small training facilities to begin training next year for Melbourne Jewish advocacy organisation. Over the soccer club, but it has taken 18 months to locate the next 3 months, fortnightly meetings were held grounds that could be made available, due to the
Fourth Annual Roundtable on Intellectual Disability Policy 91 general shortage of sporting facilities and the information packs as per S. 89 of the Disability drought reducing access to grounds. Jewish Care Act, so how do we report to government? continues to fund transport, attendant carers and 7. How would a smaller organisation (or one venue costs through the respite dollars we receive without a fundraising capacity) generate the – but all probably outside the strict interpretations funds required to undertake renovations of the funding guidelines! of existing community facilities as part of complex bi- or multi-lateral negotiations? The scouting group There are three Jewish scouting groups, and Housing during the past 5 years, one closed due to a lack of volunteers to run the group. While most halls There are a number of distinctions between people- were built through funds raised by churches centred and place-centred policy approaches and other religious groups, in accordance with in the development of housing for people with Scouting Victoria guidelines, titles to defunct a disability. A place-centred approach targets groups are returned to Scouting Victoria who then locations and provides assistance mainly in the sell the property to fund other activities. A history form of infrastructure and community facilities. exists between Jewish Care and the 3rd St Kilda People-centred approaches, in contrast, are Scouts as the group was established in the 1920s targeted at individuals with no consideration of in old train carriages on what is now the car park their location and focus on issues of education, at one of Jewish Care’s aged care facilities. Rather taxation and financial assistance for individuals than see a community venue lost, we identified to purchase or rent housing wherever they choose. an opportunity to have an additional accessible While the Victorian State Disability Plan promotes community venue and began negotiating both a person based approach, the Department’s own with the local trustees of the hall and Scouting guide to options and assistance available for Victoria. After twelve months of negotiation we people with a disability to achieve their housing goals or needs suggests otherwise. were able to secure the following agreements: The current policy states that people with a • Jewish Care would fund and project manage disability should: the renovation of a 75 year old building to make it accessible; … be able to choose where they live, with whom and in what type of housing––just like most • Jewish Care would work to recruit volunteers other members of the community. As is the case and establish a scouting group including with others in the community, making such a people with disabilities within three years; choice means considering a lot of issues such and as, whether you can afford to live in your • in return for this investment Jewish Care preferred area, whether you want to share and, would have access to the hall for six years to importantly, how you find out what options or conduct a full range of community support assistance are available (DHS, 2007). activities at any time, except when a scouting Given that most people with an intellectual activity is scheduled. disability have limited financial resources to a much greater degree than most other members Discussion points of the community, the housing options available 1. How (& where) do disability services staff learn may be limited. For example for Jewish people to negotiate formal partnership agreements? being connected to your local community means, 2. What help is expected from DHS partnerships for the majority, living in the local government staff? What help can they actually provide? areas of Glen Eira, Stonnington or Port Phillip What can they be doing to support these where most members of the Jewish community in activities? Melbourne reside, and where there are a range of community services available. 3. How do we fund partnership development within current funding structures? To illustrate the challenges a Jewish person with an intellectual disability may face: if a person with 4. How do we fund this type of work within the an intellectual disability receives the pension and granting of individual support packages? rental assistance, their fortnightly income would 5. How do we resource disability organisations be $895.50. The average rent for a one bedroom to support not for profit groups to engage in apartment in Caulfield is $440.00 per fortnight, this space? leaving the person with $455.00 per fortnight to 6. People are no longer clients of JCV, but live on. members of the scouts or sporting teams. However, a key assumption underlying a person They don’t sign consent forms, receiving centred policy approach is that “people can and
92 Fourth Annual Roundtable on Intellectual Disability Policy will move jobs and residential locations to achieve their In developing accommodation for people with an personal or family objectives” (Stimson et al., 2003, p. intellectual disability based around community 145). For a person with an intellectual disability, inclusion, we must remember that a community a people-centred policy approach, such as that is an ecological system – a ‘living system’. It is expressed in the State Disability Plan, needs to a system that sustains life, but one that has a recognise the diminished income potential of life of its own, and each of us as community people with an ID and how this can restrict their members manage, manipulate, react, and adapt ability to be connected to and remain within their to the conditions around us. We are interactive local community. elements of this system. Community participation is perhaps best understood in terms of the Jewish Care believes that people with an ID should compatibility of people’s resources and needs and be able to remain connected to the communities conditions within their living environment (see in which they are born and grow up and have Figure 1). Therefore, community participation is a social supports in place. The model developed process, rather an event. by Jewish Care Victoria was created through a planned process which involved establishing a vision through engagement with people with an Figure 1. A model for community participation intellectual disability, their families and carers, staff, and community leaders and donors from the Jewish community. This process was undertaken over two years using a community development model. To achieve this affordable housing must Inter-personal be made available in all communities recognising Resources that disadvantage for people with an ID is complex and multifaceted. To achieve this Jewish Care is placing more emphasis on individualised planning and assistance to enable adults with a disability to remain in their local community. Advocates of Participation people-centred approaches argue that these offer more control for service users because they are free to use their funding packages to purchase services of their choice. Environmental Support However there are limits to this choice. In Victoria, Conditions Network for example, there is simply not enough private- market affordable housing suitable for the housing needs of people with intellectual disabilities. A study conducted by Berry and Hall (2001) reports that despite the rent-assistance program, low- income households in the general population cannot afford to rent average valued houses of In acknowledging the above premise, the services any size in almost any suburb of metropolitan Jewish Care currently delivers are envisaged Melbourne, forcing people to search for low-rent as part of a broader communal network which is based on the principle that people with a dwellings in a time when these rapidly disappear disability should be encouraged to participate as from the market. In other words, individualised fully as possible in the Jewish community. This funding and rent assistance – both typical people- is illustrated in Figure 2. In response to an urgent centred funding schemes – may allow individuals and growing need for housing for people with more freedom to choose, but there is very little to an intellectual disability, Jewish Care is creating choose from in the private housing market that is new housing (Glen Eira Road) that is located in affordable. the centre of Melbourne’s Jewish community. The Glen Eira Road development will provide Case Study 2 – Development of Housing long-term supported-residential accommodation Jewish Care Victoria has a long and proud history in four houses for adults with disabilities. The will of providing services to members of the Jewish program support people in a safe, stimulating and community, including supported accommodation, Jewish environment. Individualised planning will individual outreach support, transition supports ensure that goals for each resident are established from school, and respite support to families, and that a range of range of person centred including recreational and overnight respite. opportunities for skill development, independence
Fourth Annual Roundtable on Intellectual Disability Policy 93 and participation within the local community is Discussion Points identified and encouraged. This has been largely 1. How do current policies incorporate funded through the Jewish community. recognition of the diminished incomes of JCV also recognises that while the accommodation people with an intellectual disability? Is there will provide a ‘community presence’, without a need to do so? additional actions it will not necessarily bring 2. Provision of human services has transformed about community inclusion. Therefore, as over the past two decades from a welfare a community service provider, Jewish Care model to a consumer model, yet have people acknowledges it has a key role to play in building with an intellectual disability gained access structures that facilitate the interaction of people a full range of housing choices or are they with an intellectual disability in the community limited? as illustrated in Case Study 1 above. This is to be 3. How do we (government, housing associations, achieved through the creation of new roles for disability support providers and philanthropic staff, and by intentionally seeking to limit the use bodies) fund housing infrastructure for people of paid staff to meeting essential activities of daily with an intellectual disability to remain living living, such as medical and personal self care in inner city communities? tasks, and seeking to develop multiple circles of 4. Can we meet the additional infrastructure support, and by inference, increase volunteerism costs? and community participation. While the outcomes are understood, the funding mechanisms for these 5. What policy settings are required? (c/f the actions are not yet entirely transparent. residential aged care system of bonds being reliant on turnover) Figure 2: Jewish Care – A community vision for people 6. Should we develop person based policies with a disablility that support community development across areas of advantage and disadvantage? 7. Public / Private Partnerships have become a common form of developing essential public infrastructure (roads, water, education, prisons, etc). What consideration should be given to exploring PPPs at an individual level? 8. Are there other creative models of housing that we are afraid to explore?
References Berry, M., & Hall, J. (2001). Policy options for stimulating private sector investment in affordable housing across Australia: stage 1 report, outlining the need for action. Sydney: Affordable Housing National Research Consortium. Clement, T., & Bigby, C. (2008). Breaking out of a distinct social space: Reflections on supporting community participation for people with severe and profound intellectual disability. Journal of Applied Research in Intellectual Disability, 22, 264-275. Department of Premier and Cabinet. (2005). A Fairer Victoria: Creating opportunity and addressing disadvantage. Melbourne: Government Printer Department of Premier and Cabinet. (2005). Challenges in Addressing Disadvantage in Victoria: Reporting on progress; Identifying future directions. Melbourne: Government Printer Disability Services Division, Department of Human Services. (2002). Victorian State Disability Plan 2002-2012. Melbourne: State Government of Victoria
94 Fourth Annual Roundtable on Intellectual Disability Policy Disability Services Division, Victorian Department van Alphen, L.M., Dijker, A.J.M., van den Borne, of Human Services. (2007). Housing options unlocked: H.H.W., & Curfs, L.M.G. (2009). The significance of A guide to options and assistance available for people neighbours: views and experiences of people with with a disability to achieve their housing goals or needs. intellectual disability on neighbouring. Journal of Melbourne: State Government of Victoria Intellectual Disability Research, 53(8), 745-57. Krahn, G.L., Hammond, L., & Turner, A. (2006). Verdonschot, M. M. L., de Witte, L. P., Reichrath, A cascade of disparities: health and health care E., Buntinx, W. H. E., & Curfs, L. M. G. (2009). access for people with intellectual disabilities. Community participation of people with an Mental Retardation And Developmental Disabilities intellectual disability: A review of empirical Research Reviews, 12, 70-82. findings. Journal of Intellectual Disability Research, Stimson, R., Baum, S., & O’Connor, K. (2003). The 53, 303-318. social and economic performance of Australia’s large regional cities and towns: implications for rural and regional policy. Australian Geographical Studies, 41(2), 131-147.
Fourth Annual Roundtable on Intellectual Disability Policy 95 Shepparton Access: We used our Changing Days experience as an avenue to forge forward with our vision which Creating Pathways into the reflected the vision of the Victorian Government, of Community. An Evolutionary being a stronger and more inclusive community; “a place where diversity is embraced and celebrated, Journey to Community and where everyone has the same opportunities Inclusion to participate in the life of the community and the same responsibilities toward society as all other Wendy Shanks & Carolynne Young citizens of Victoria” (Victorian State Disability Plan, 2002). Shepparton Access embraced the vision and Established in 1991, Shepparton Access is a small has modelled a service response to promote rural community organisation that believes in community inclusion. people and what they can achieve. Our Mission is to create pathways into the community for Focussing on community inclusion presents a people with disability. Shepparton Access fundamentally different way of seeing people provides Day Programs, Futures, and Individual with disability and supporting them. Community Support Packages. We are dedicated to innovative inclusion has the potential to change the types flexible solutions and to promoting participation of activities in which people with a disability are and inclusion for people with disability. Over the involved, the places they pursue these activities, years Shepparton Access has observed people and the people with whom they share these activities. with disability facing many inequalities and barriers to community inclusion. These barriers Changing Days assisted service users and have become our challenge. The barriers have Shepparton Access to transition to new service created opportunities for Shepparton Access to delivery approaches, provide individualised meet the aspirations of people with disability planning support, real choice and viable pathways and to address the needs of our local community. to further education, employment and community Over time our service delivery paradigm has activities. to a certain extent been realised. Or has it? We Changing Days required us to be creative and continue to debate what inclusion is and how we think outside the box in order for Shepparton as a service respond to our service users needs. Access to better meet service user’s aspirations We view this as an evolutionary journey. and to address the needs of the local community. Four positive outcomes for service users Our Changing Days Initiative included: (Dec 2006 – July 2008): • Greater independence Shepparton Access was successful in receiving funds through the Department of Human Services, • Greater influence over decisions Changing Days Initiative. • Greater choice “Changing Days will assist disability day services • Greater community inclusion to realise the vision of the VSDP. It will support the transition to new service delivery approaches So what did Community Inclusion Look that provide individualised planning and support Like for us? in the community, real choice, and viable pathways Our challenge was to define what we considered to employment and social participation through to be community inclusion. It became apparent partnerships with local, generic community after conversations with consultants, academics services” (Changing Days Initiative, Department and others within the disability sector; there of Human Services 2006-2008). was a wide variety of definitions, none of which Prior to beginning the Changing Days journey, we appeared the same. and as we suspect many other disability services Shepparton Access came up with our own thought we were achieving reasonable outcomes. definitions which centred on meaningful However, after we took the time to reflect upon relationships with others in the community. This each person’s activities for each day of the week, as a concept had not always sat comfortably with we came to the conclusion that we were not staff members and at times families. Changing achieving the outcomes as we had first thought. Days required that service users take more Coming to grips with the reality that we weren’t responsibility. Doubt was cast by families and as good as we thought became a fundamental step carer’s as to how safe this new approach was. It in the process of Changing Days. was a fear of the unknown.
96 Fourth Annual Roundtable on Intellectual Disability Policy We were moving away from the “safe” system we The Evolutionary Journey to Community had created, which in many ways was designed to Inclusion protect people from uncertainty, to a philosophy of As we journeyed through our organisational inclusion which embraces the notion of flexibility, change process we needed to evaluate what it risk-taking, choice, diversity and creativity. was that service users wanted, how formal and Shepparton Access identified community informal support systems could respond and inclusion within a series of concentric circles how Shepparton Access could influence the shape where citizenship is the aspiration and vision of of resources to more effectively support service all service users. users. Shepparton Access arranged a consultation session with support workers. Our move toward community inclusion has been about understanding, what each individual service user’s skills and abilities are and how through the planning process we can work towards building upon these identified strengths. This resulted in support staff identifying a variety of changes to their role, some of which included: “identifying enabling and preparing people to do what they choose”. “changing from doing a program to providing support in the community” “advocating, standing beside or standing behind service users” “getting to know and to work with most service users during the week” “support staff and service users being recognised and respected in the community” In saying this, the changed roles were reportedly “more stressful (as well as satisfying) because staff This implies that from the outer to the inner circle had less control, worked harder and found it more there is increased meaningful interactions with nerve racking (to watch, wait and worry)”. This led other people in the community, or other citizens. to staff turnover during the initial transition and some questioning around position descriptions, Our Definitions: roles and responsibilities and the need for review From Changing Days, Shepparton Access of policies and procedures in line with the new developed the following definitions: directions. ‘Community means individuals or groups From the support workers own reflections Participation': being Inclusion’: members of the regarding service delivery, a change in staff roles community, and interacting with and position descriptions transpired. This led us the community in activities which away from seeing the support worker’s role as are meaningful to each person. primarily direct support to incorporating advocacy, ‘Community means individuals or groups community capacity building and planning. Participation’: accessing the community with Shepparton Access adopted a person centred limited interaction with the planning approach and appointed a person within community. the organisation specifically to carry out this role. ‘Community means courses, both formal and The plans and their reviews have been well received Education’: informal, which are funded by by service users, families, carers, significant others the Hume Regional Council of and people in the community who have come to Adult Community and Further be included in service users circles of support. Education (and may be provided With an emphasis on planning, the journey has also by Shepparton Access). been about reframing for individuals the notion ‘Community means individual or group of disability and helping individuals redefine Hub activities’: activities that take place within the their status within the community. Shepparton Mechanics Institute building with Access has strived to shift the dependency of the other people with disabilities. community sectors away from the support worker.
Fourth Annual Roundtable on Intellectual Disability Policy 97 This has been achieved in a manner which has Figure 1: encouraged the service user to take the lead while out in the community, with the support worker fading into the background over time. Initially the response from the community to the service user was “Where is your support worker?”
Case Studies To celebrate Changing Days, service users reflected upon their experiences and shared their stories and amazing achievements. ‘We dared to dream and our dreams have come true. We are now a part of our community’ Amy: “I have always wanted to work at a hairdresser’s even when I was at school.” Today, Amy continues to enjoy her work at Freshair Amy transitioned to Shepparton Access from a and has a critical role on Thursdays at the salon. local secondary college. As part of the process of She is well known to the clientele, many make developing a support plan, Amy had some very their appointments, so that they can be treated to clear ideas about what she wanted to achieve, one their regular cuppa and chat. of which was to work in a hairdressing salon. Over Luke: “I would like to keep going to work with time and as a result of Amy’s planning and review Barry.” meetings, Amy was able to realise this goal. Upon leaving school, Luke was employed by a Amy enrolled in Certificate 1 in Work Education business service. It was soon identified that Luke to foster the development of social and personal was struggling to adjust to the daily work routine skills relevant to participation in mainstream of employment. This subsequently led to Luke employment. commencing at Shepparton Access three years A work placement was established with a local ago. hairdresser, “Freshair”. This was within walking During Luke’s Support Plan meeting, Luke clearly distance from Shepparton Access. Amy was expressed his desire to explore employment in the supported to cross the busy intersection on her future, and his wish to work in an environment way to work. After 10 weeks of intense support, with people who shared his passion for cars. Amy began accessing Freshair independently. Luke also indicated his interest in learning to play For Amy, and her family, this was an important achievement. the drums and joining “Dancing with the Stars”. Amy was supported to become skilled at many After searching the local community, Luke began tasks in the hairdressing salon, including dusting lessons playing his newly purchased drum kit, and shelves, sweeping the floor, folding towels, began dance lessons at the local dance studio. cleaning tint bowls and safely preparing tea and Luke became a valued member of the McDermott coffee for customers. Prestige Panels Workshop team. Luke eagerly Through Certificate 1 in Work Education, attends his new work place to complete his many A vocational plan and job description was and varied tasks. He has established many new developed. friendships and enjoys being ‘one of the boys’. Amy’s aspiration to work in the hairdressing Today, Luke continues to work each Monday at salon has been complimented by a variety of other McDermotts, and together with Barry and Bill programs such as, money and time, advocacy, attends the local car club meetings and activities. literacy and photography. These programs have Luke still enjoys his weekly drum lessons, and focused on Amy’s physical, social and emotional plays with a group of musicians at the church health and well-being, and her passion for hall on Tuesday evenings. Last year at the photography. Recently, one of Amy’s photos was Shepparton Dance Sport Competition, Luke had featured as part of a photographic competition in the opportunity to partner with Amanda Garner the local newspaper. and was runner up in the novice division. Figure 1 is representative of the program activities Figure 2 is representative of the program activities Amy has participated in over the past three years Luke has participated in over the past three years and shows the move Amy has made towards and shows the transition he has made towards connecting and becoming part of a more inclusive connecting and becoming part of a more inclusive community. community.
98 Fourth Annual Roundtable on Intellectual Disability Policy Figure 2: Andy now spends 5 days each week working alongside Bob, and has a significant and valued role within the school community. During 2009, Andy became adept in taking charge of the pedestrian crossing at the end of the school day. Figure 3 is representative of the program activities Andy has participated in over the past three years and shows the evolution he has made towards connecting and becoming part of an inclusive community. Figure 3:
Andy: “I work with Bob, I am a good worker and Bob is my best mate.” Andy lives in a small rural community with no transport connection to Shepparton. Andy was transported to and from Shepparton Access each morning and afternoon, a one and a half hour round trip twice a day for his parents. After 18 months of travel, Andy and his circle of support embraced the opportunity to explore services in their local community. Joanne: “One of the things I really enjoy is helping Andy had always been a respected student at others in the community by doing volunteer work.” St Mary’s of the Angels Secondary College, and expressed a desire to return to the school and help Joanne returned to Day Programs in 1999 after Bob with his cleaning duties. The principal at St many years of illness and has enjoyed learning Mary’s became part of Andy’s circle of support about the community and becoming involved in and agreed to Andy joining the school staff for a the community. trial period, with support from staff at Shepparton Participation in self advocacy has provided new Access. opportunities for Joanne to speak out and make Consideration needed to be given to the cost of the decisions that impact upon her life. initial and possible ongoing support Andy would When preparing for her last Support Plan, Joanne require to learn and become independent with chose to facilitate her own planning process using his allocated tasks. This cost became a barrier to a person centred approach. She identified her own Andy’s goal of assisting Bob to clean the school. circle of support, sent out invitations and prepared Researching a variety of models of support, her preliminary plan. Joanne chaired her Support the natural support model (Dileo, Luecking & Plan Meeting and discussed her aspirations and Hathway, 1995) became to model of choice for decisions with her family, carers, friends and both St Mary’s and Shepparton Access. Andy’s service providers. Individual Support Package (ISP) was utilised to This proved to be quite confrontational for some increase Bob’s hours of work, which then enabled individuals within Joanne’s circle of support. him to provide the necessary support Andy At the conclusion of the Support Plan Meeting required to become skilled and accomplished at Joanne was disappointed by her family and carer’s his various cleaning tasks. response and their lack of support in relation Bob was provided with training to meet Andy’s to her decision to become more independent support needs, and the team of Bob and Andy within the community. It appeared that Joanne’s was created. circle of support were more comfortable with In 2007, FOOTT Waste acknowledged the role that Joanne spending the majority of her time in our Andy played in the collection of waste within the Community Hub activities. school and church community, and engineered For Joanne, this became a quandary, as her choices and constructed a hydraulic hoist to reduce the were different from the choices of her family and OH&S risks associated with manual lifting and carers. Over a two year period, Joanne slowly the emptying of 34 bins each day. built her confidence and skill level which in turn
Fourth Annual Roundtable on Intellectual Disability Policy 99 became a process of osmosis for family members Where has the Winding Path led us and and carers. As the fear and concerns dissipated, how would we Describe Community gradual inclusion occurred. Inclusion now? Figure 4 is representative of the program activities Changing Days presented the challenge of looking Joanne has participated in over the past three for ways to rediscover the potential within society, years and shows the transition she has made to show the value of inclusion to people outside towards connecting and becoming part of an its walls and to connect with ideas that had inclusive community. broad appeal. It was about acknowledging the importance of trust, reciprocal relationships Figure 4: and understanding, in order to address barriers that presented along the way. Some of which included: • Families and carer’s requiring a guarantee that an equivalent level of service would be provided, as well as a high level of quality service delivery. This is an ongoing need that is as much about human condition and our overall response to change. • For service users the difficulties associated with inclusion meant “coping with social pressures such as being on their own”. Knowing how to cope with insolence from community members was a challenge for both service users and support workers. With gentle persuasion and careful planning the • Because of this “safe” system we had created expectations have shifted and for a number of over the years, designed to protect people our service users, enabling them to fade out their from uncertainty, this in retrospect possibly level of support and providing them with greater guarded service users experiences. This very inclusiveness, in order to access community much became a process about organisational activities independently. change with staff needing to take a step back, It is impossible to imagine all of the potential allowing service users to take responsibility problems that can and will arise as we develop for their choices and actions. inclusive communities. Our trek has required that we ensure sensible but flexible risk policies Shepparton Access strongly aligns itself with the are in place which do not inhibit our service frameworks that have come from the Victorian users’ opportunities to form new relationships State Government. Since 1991 the quest has always and embrace new experiences. Shepparton Access been to achieve greater community inclusion has researched various tools to enable us as and to advance the dignity, worth, human rights an organisation to evaluate and plan supports and full potential of people with disabilities. We and services as well as marry the philosophy began Changing Days already with insight to the of community inclusion. In order to do this, importance of community inclusion. the emphasis has been to provide appropriate Shepparton Access provides support to fifty resources and staffing patterns to meet each two individuals with disability. Of the fifty two individuals needs. individuals who are supported by Shepparton Managing risk has required that we are resource Access the following table provides an overview intense initially in the planning and setting up of their age range. phase. The balancing act has been to leave sufficient funds to maintain and monitor individuals programs and activities. Once the program or Age 18-30 31-50 51+ activity has progressed to the stage that staff Percentage 48% 31% 19% supports can be reduced, the wheels have been set in motion once again with the focus shifting toward other individuals in the organisation For the purpose of analysing levels of support and their plans. Moving from community hub necessary to achieve community inclusion activities to community participation with the big Shepparton Access have considered this from two picture objective, to ultimately achieve community angles, funding levels and community inclusion inclusion. according to our definitions.
100 Fourth Annual Roundtable on Intellectual Disability Policy Based on the Department of Human Services’ distribution of satellites across the community funding policy framework the following table is but still unequivocally in isolation to the a summary of our service user’s overall level of broader community. funding within the context of individuals Service • Some of our service users moved from Needs Assessment levels (SNA): ‘participation’ having been on the edge, to inclusion where service users were transported to community activities, partaking Low Moderate High independently without support workers (SNA 1 & 2) (SNA 3 & 4) (SNA 4 – 5.5) present. 20% 52% 28% • Service user’s had become regulars at different places and were recognised by community members. Often community members would enquire where an individual was if they were From a community inclusion perspective and in missing from their usual activity within the accordance with our definitions, we have calculated community. the following to reflect the support needs in terms of achieving community inclusion: • Some groups were rostered with no support workers. They go directly to the venue within the community. Low Moderate High • Service users had to rely on one another more 8% 33% 59% as a support network. Shepparton Access observed service user’s working in together more and problem solving their way through Our four case studies are representative of SNA different activities. 3 funding level. Traditionally funding levels have • Many service users had stepped outside their been based on segregated settings and the variables comfort zone and were far more willing to try associated with community inclusion have not new things. They had become more accepting necessarily been taken into consideration. In our or adaptable to change. Slowly shifting away view, these funding allocations are not reflective from the “safe” system that had been created of our service users support needs when aspiring to protect them. to meet the goal of community inclusion. From our assessment, support needs have increased Greater community inclusion could only be overall and changed the way we provide support. achieved by developing and rolling out Support This shift in classification is primarily due to Plans. It could also be said that Changing Days the acknowledgement that each individual has was as much about skilling up individuals with a their own unique support needs in order to take disability as it was about developing knowledge, charge of and responsibility for their own lives. skills and confidence in the community in order Our approach has been based on the values of to provide informal support. Self-Determination. As an organisation we have In January of 2009, Shepparton Access once needed to utilise a variety of innovative support again sat down and reflected upon strengths and models to meet the desires of our service users, weaknesses from a service delivery perspective. community, businesses and services. Again, this led us back to the debate of whether The underpinning value of Self Determination or not our service users were part of an inclusive has provided Shepparton Access with a steadfast community. We asked ourselves the question: approach to providing people with disability Self- Has the focus shifted from awareness raising Directed Support. (participation) to action (inclusion)? When evaluating our programs/activities, was our Since the beginning of Changing Days we have taxonomy a true reflection of what was really seen a decrease in the low categories for both going on? We fractioned down the aphorism, funding levels and community inclusion. This is community inclusion: largely due to Shepparton Access having created pathways to employment and further education. If we look at community as being sustainable we can surmise that it is made up of all kinds From December 2006 to July 2008, some of what of people, who all experience vulnerability and we saw as our organisation having accomplished, dependence. Often for a person with a disability included: this is amplified and can be a useful magnification • Individuals were now included as part of of the human condition in general. For Shepparton community activities as opposed to carrying Access, the Changing Days Initiative was the out activities in separate rooms within the right time to reorient ourselves toward a kind of community. Previously we saw ourselves as a resilience that comes from acknowledgement of
Fourth Annual Roundtable on Intellectual Disability Policy 101 the human condition as involving dependence What resulted was the addition of a definition, that and vulnerability. This involves a shift in power, being the permutation of community participation/ towards partnership and reciprocation on all levels. inclusion. This now allows us to clearly demarcate Each and every one of us carries a certain degree true inclusion, as well as identify individuals who of reliance on others around us. For example, on are on the road to functioning at full capacity family, and friends for emotional support, on our within the wider community. We have found this employers, interest groups, banks, café’s etc. These to be helpful in allowing our planners to better relationships are usually two way where both identify gaps in service delivery and areas where parties benefit in some way. This mutual benefit is aspects of the community may require additional a cornerstone of society. supports in order for community inclusion to We looked at a number of different definitions be attained. You can see from Figure 5, that for inclusion. The most resonating when reading this has inevitably changed the data we collect through literature were the following: and the reflection upon our service in terms • Quinetta Roberson (2006) who expressed that of achieving community inclusion. The tables inclusion requires a paradigm shift in human exemplify the rhetorical expression of two steps consciousness, awareness, and interaction forward and one step back. This said, they also and validate the development Shepparton Access has • Miller and Katz (2002) presents a common made towards greater community inclusion for definition: “Inclusion is a sense of belonging: our service users. feeling respected, valued for who you are; feeling a level of supportive energy and Conclusion commitment from others so then you can do your best work.” If we are to be true to the definitive of what community inclusion represents, maybe again • Miller and Katz talk about inclusion as a shift we have come to the understanding that we are in organisational culture with all individuals not achieving the outcomes that we first thought. functioning at full capacity, feeling more valued, and included in the organisation’s In saying this, we acknowledge what we have mission. accomplished thus far on this journey. We see this as a long and winding road, that leads us to who This posed the question…Do our service users knows where, who knows when...... By no means have this experience of dependence and reliance has our journey come to an end, we sit comfortably to some extent on the wider community. with the fact that this is an evolutionary process Are the individuals we have identified as part and believe our journey is capable of achieving of what we think is an inclusive community, much more. functioning at full capacity and feeling more valued as a whole in our wider community? As an organisation we have begun to contemplate how we might look in 2020. We continue to explore This led Shepparton Access back to our original our goals and aspirations and look forward to definitions of community inclusion and community participation. As we reflected upon aligning this with the new 10 year State Plan. our original descriptions, our yard stick changed. Some of the questions we will continue to ponder We came to the conclusion that we had to a certain include: extent marginalised our definitions which in 1. Will the new State Plan change our direction, affect was limiting our capacity to strive for and achieve greater community inclusion. thinking and terminology? 2. Will we have the resources to continue to Figure 5: expand our knowledge and expertise to embrace new and innovative models such as SIS and I-CAN to implement continuous improvement? 3. How will we strengthen our partnership with people with disability and their families to continue the transition through the reorientation of disability supports and self directed approaches? 4. What will the future role of the support worker look like; will support workers become part of and sit with generic services?
102 Fourth Annual Roundtable on Intellectual Disability Policy 5. Will independent advocacy be accessible References within rural communities? Department of Human Services, (2002), Victorian 6. Will rural transport costs impact upon our State Disability Plan 2002-2012. service support? Dileo, D., Luecking, R. & Hathaway, S. (1995). 7. Who will be the future leaders and drivers Natural supports in action: Strategies to facilitate within services which support people with employer supports to workers with disabilities. St. disability in rural settings? Augustine, FL: Training Resource Network, Inc. 8. Will Shepparton Access maintain our tradition Miller, F. & Katz, J, (2002). The Inclusion Breakthrough: as a leader and mentor in the sector? Unleashing the Real Power of Diversity. San Francisco: 9. Will Shepparton Access be viable in 2020? Berrett-Koehler Publishers Roberson, Q. (2006). Disentangling the Meanings of Diversity and Inclusion in Organizations. Group & Organization Management, 31(2), 212-236.
Fourth Annual Roundtable on Intellectual Disability Policy 103 104 Fourth Annual Roundtable on Intellectual Disability Policy Fourth Annual Roundtable on Intellectual Disability Policy 105 106 Fourth Annual Roundtable on Intellectual Disability Policy Attendees
Alma Adams Unaffiliated Arthur Rogers DHS Carolynne Peterson annecto Carolynne Young Shepparton Access Cath McNamara VCASP Catherine McAlpine Down Syndrome Victoria Christine Bigby School of Social Work and Social Policy, LaTrobe University Chris Fyffe Grimwood Chris Noller St John of God ACCORD Christine Owen DHS Claude Staub St John of God ACCORD Daniel Leighton Jewish Care Deb Thurecht Melbourne City Mission Deb Rouget PLA Diane Craig School of Social Work and Social Policy, LaTrobe University Enaksha Garde Scope Erin Wilson Deakin University Estelle Fyffe annecto Evelina Swedish student on placement DSC Gabrielle Urban Jewish Care Gill Pierce Carers Victoria Goran Swedish student on placement DSC Helen Bryant National Disability Services Hilary Johnson School of Human Communication Sciences, LaTrobe University Ian Mclean Golden City Support Services Janet Owenst Deakin University Jen Deurwaarder Melbourne City Mission Jenni Hendy SCOPE Jennifer Boulton Yooralla Jennifer Clegg Nottingham University John Chesterman Office of the Public Advocate Kathryn Lamb DHS Leanne Dowse SSIS, UNSW Lee Ann Basser Law Program, LaTrobe University Liz Bishop St John of God ACCORD Lorna Hallahan Flinders University Lynne Coulson Barr Disability Services Commission Margaret Nicol St John of God ACCORD Marie Braudigom annecto Mark Feigan Politics Program La Trobe University Michael Bink Scope Mirella Danelutti DHS
Fourth Annual Roundtable on Intellectual Disability Policy 107 Moira Buchholtz Office of Senior Practitioner Natalie Thomas Office of Disability Patise Frawley School of Social Work and Social Policy, LaTrobe University Paul Ramcharan RMIT Pauline Johnston La Trobe Lifeskills Peter Newsome St John of God ACCORD Phillipa Angley NDS Pina Telgenkamp St John of God ACCORD Ralph Hampson Jewish Care Sally Robinson Griffith University Sanjib Roy Yooralla Sarah Fordyce NDS Shanker Pragnaratne Scope Silvana Gugliandandolo St John of God ACCORD Sue Balandin Molde University Teresa Iacono Monash University Tim Clement School of Social Work and Social Policy, LaTrobe University Tom Worsnop Melbourne City Mission Wendy McGrellis SCOPE Wendy Shanks Shepparton Access Yvette Proud NSW Council for Intellectual Disability
108 Fourth Annual Roundtable on Intellectual Disability Policy ISBN 978 192 1377 853
Published by School of Social Work and Social Policy La Trobe University Bundoora Vic. 3086 Australia
Created by Allardice Group Blackburn Vic. 3130
Bigby, C., & Fyffe, C (2010). More than Community Presence: Social Inclusion for People with Intellectual Disability. Proceedings of the Fourth Annual Roundtable On Intellectual Disability Policy. Bundoora: La Trobe University. School of Social Work and Social Policy, La Trobe University
More than Community Presence: Social Inclusion for People with Intellectual Disability
Proceedings of the Fourth Annual Roundtable on Intellectual Disability Policy
Held on Friday 23 October, 2009
Edited by Christine Bigby and Chris Fyffe