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