Abstract
People with intellectual disabilities fare badly on all indicators of social inclusion compared to the general community. The reasons for this stem from the complex interaction of their individual needs for support with participation and discriminatory social structures. Community participation is a core component of social inclusion, which despite significant policy attention and program investment remains elusive for people with intellectual disabilities. This chapter explores three primary ways that community participation has been conceptualized for adults with intellectual disabilities, and reviews evidence about strategies for achieving it. The significance of conceptual clarity and need to differentiate and tailor programs to people with intellectual disabilities run as core themes through the chapter. The first two sections provide a brief introduction to a critical realist understanding of intellectual disabilities and broad conceptualizations of community participation. The following sections discuss community participation as convivial encounter, community participation as social relationships, and community participation as a valued sense of belonging and identity, and consider the types of interventions and strategies for furthering participation that follow from each of these. Attention is drawn to the scant evidence base for effective programs and the limited focus of programs on people with more severe and profound intellectual disabilities.
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References
Amado, A. (2014). Building relationships between adults with intellectual disabilities and community members: strategies, art and policy. Research and Practice in Intellectual Disabilities, 1(2), 111–122.
Anderson, S., & Bigby, C. (2017). Self-advocacy as a means to positive identities for people with intellectual disability: “We just help them, be them really”. Journal of Applied Research in Intellectual Disability, 30, 109–120. http://onlinelibrary.wiley.com/doi/10.1111/jar.12223/abstract.
Anderson, S., & Bigby, C. (2020). Community participation as identity and belonging. A case study of arts project Australia. Research and Practice in Intellectual and Developmental Disability. https://doi.org/10.1080/23297018.2020.1753231.
Australian Social Inclusion Board – Indicators Working Group. (2009). A compendium of social inclusion indicators. Commonwealth of Australia.
Bates, P., & Davis, F. (2004). Social capital, social inclusion and services for people with learning disabilities. Disability & Society, 19, 195–207.
Bigby, C. (1998). Shifting responsibilities: Patterns of formal service use by older people with intellectual disability. Journal of Intellectual and Developmental Disability, 23, 229–243.
Bigby, C. (2008). Known well by no one. Trends of the informal social networks of people with intellectual disability five years after moving to the community. Journal of Intellectual and Developmental Disabilities, 33(2), 148–157. http://hdl.handle.net/1959.9/453190.
Bigby, C. (2020). Dedifferentiation and people with intellectual disabilities in the Australian National Disability Insurance Scheme: Bringing research, politics and policy together. Journal of Intellectual and Developmental Disabilities. https://doi.org/10.3109/13668250.2020.1776852.
Bigby, C., & Anderson, S. (2020). Creating opportunities for convivial encounters for people with intellectual disabilities: “It looks like an accident”. Journal of Intellectual and Developmental Disabilities. https://doi.org/10.3109/13668250.2020.1812178.
Bigby, C., & Araten-Bergman, T. (2018). Models for forming and supporting circles of support for people with intellectual disabilities. Living with Disability Research Centre, La Trobe University.
Bigby, C., & Balandin, S. (2005). Another minority group: A survey of the use of aged care day programs and community leisure services by older people with lifelong disability. Australasian Journal on Aging, 24(1), 14–18.
Bigby, C., & Craig, D. (2017). “My life is a lot richer!” A case study of an intentional friendship between a volunteer and adult with severe intellectual disability. Journal of Intellectual and Developmental Disabilities, 42, 180–189. goo.gl/DPD7Zo http://www.tandfonline.com/doi/full/10.3109/13668250.2016.1219701.
Bigby, C., & Douglas, J. (2021). Examining the complexities of support for decision making practice. In I. Khemka & L. Hickson (Eds.), Decision making by individuals with intellectual and developmental disabilities: Research and practice. Springer.
Bigby, C., & Wiesel, I. (2015). Mediating community participation: Practice of support workers in initiating, facilitating or disrupting encounters between people with and without intellectual disability. Journal of Applied Research in Intellectual Disabilities, 28, 307–318.
Bigby, C., & Wiesel, I. (2019). Using the concept of encounter to further the social inclusion of people with intellectual disabilities: What has been learned? Research and Practice in Intellectual and Developmental Disability, 6(1), 39–51. https://doi.org/10.1080/23297018.2018.1528174.
Bigby, C., & Wiesel, I. (2021). Performance, purpose and creation of encounter between people with and without intellectual disabilities. Editorial for Special Section on Encounter. Journal of Intellectual and Developmental Disability, 46(1), 1–5. https://doi.org/10.3109/13668250.2020.1856107.
Bigby, C., Balandin, S., Fyffe, C., McCubbery, J., Gordon, M. (2004). Retirement or just a change of pace: An Australian national survey of disability day services used by older people with disabilities. Journal of Intellectual and Developmental Disabilities, 29(3), 239–254.
Bigby, C., Anderson, S., & Cameron, N. (2018a). Identifying conceptualisations and theories of change embedded in interventions to facilitate community participation for people with intellectual disability. A scoping review. Journal of Applied Research in Intellectual and Developmental Disabilities, 31(2), 165–180. http://onlinelibrary.wiley.com/doi/10.1111/jar.12390/full.7.
Bigby, C., Anderson, S., & Cameron, N. (2018b). Full report: Designing effective support for community participation for people with intellectual disabilities. Report for Disability Research and Data Working Group. Melbourne La Trobe University, Living with Disability Research Centre.
Bigby, C., Tipping, S., Bould, E., & Thiele, R. (2019). Final report: Strategies to support people with intellectual disabilities to participate in voting. Bundoora: Living with Disability Research Centre, La Trobe University. http://hdl.handle.net/1959.9/563636.
Blonk, L. (2021). Micro-recognition, invisibility and hesitation: Theorising the non-encounter in the social inclusion of people with intellectual and developmental disabilities. Journal of Intellectual and Developmental Disability, 46(1), 6–14. https://doi.org/10.3109/13668250.2020.1812179.
Bould, E., Bigby, C., Bennett, P. C., & Howell, T. J. (2018). ‘More people talk to you when you have a dog’– dogs as catalysts for social inclusion of people with intellectual disabilities. Journal of Intellectual Disability Research, 62, 833–841. https://doi.org/10.1111/jir.12538.
Bredewold, F. (2021). Struggling with sameness and strangeness: (Non)-encounters between people with and without intellectual disabilities in two Dutch neighbourhoods. Journal of Intellectual & Developmental Disability, 46(1), 15–25. https://doi.org/10.3109/13668250.2020.1851929.
Bredewold, F., Tonkens, E., & Trappenburg, M. (2016). Urban encounters limited: The importance of built-in boundaries in contacts between people with intellectual or psychiatric disabilities and their neighbours. Urban Studies, 53(16), 3371–3387. https://doi.org/10.1177/0042098015616895.
Bredewold, F., Haarsma, A., Tonkens, E., & Jager, M. (2019). Convivial encounters: Conditions for the urban social inclusion of people with intellectual and psychiatric disabilities. Urban Studies, 57(10), 2047–22063. https://doi.org/10.1177/0042098019869838.
Bridgman, P., & Davis, G. (2000). The Australian handbook (2nd ed.). Crows Nest: Allen and Unwin.
Brown, H., & Smith, H. (1989). Whose ‘ordinary life’ is it anyway? Disability, Handicap and Society, 4, 105–119.
Brown, H., & Smith, H. (Eds.) (1992). Normalisation: A reader for the nineties. Tavistock/Routledge: Pp. xxii + 189. £ 11.99 paper. ISBN 0-415-06119-9.
Bryson, L., & Mowbray, M. (1991). Community’: The spray-on solution. Australian Journal of Social Issues, 16, 255–267.
Clement, T., & Bigby, C. (2009). 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 Disabilities, 22, 264–275.
Clifford-Simplican, S., & Leader, G. (2015). Counting inclusion with Chantal Mouffe: A radical democratic approach to intellectual disability research. Disability & Society, 30, 717–730.
Clifford-Simplican, S., Leader, G., Kosciulek, J., & Leahy, M. (2015). Defining social inclusion of people with intellectual and developmental disabilities: An ecological model of social networks and community participation. Research in Developmental Disabilities, 38, 18–29.
Commonwealth of Australia. (2011). 2010–2020, National Disability Strategy, An initiative of the Council of Australian Governments. Canberra. author. https://www.dss.gov.au/sites/default/files/documents/05_2012/national_disability_strategy_2010_2020.pdf
Craig, D., & Bigby, C. (2015a). Critical realism in social work research: Examining participation of people with intellectual disability. Australian Social Work, 68(3), 309–323. https://doi.org/10.1080/0312407X.2015.1024268. http://www.tandfonline.com/doi/full/10.3109/13668250.2016.1219701.
Craig, D., & Bigby, C. (2015b). “She’s been involved in everything as far as I can see”: Supporting the active participation of people with intellectual disabilities in community groups. Journal of Intellectual and Developmental Disability, 40, 12–25. http://www.tandfonline.com/doi/full/10.3109/13668250.2014.977235.
Cummins, R., & Lau, A. (2003). Community integration or community exposure? A review and discussion in relation to people with an intellectual disability. Journal of Applied Research in Intellectual Disabilities, 16, 145–157.
Darragh, J., Ellison, C., Rillotta, F., Bellon, M., & Crocker, R. (2016). Exploring the impact of an arts-based, day options program for young adults with intellectual disabilities. Research and Practice in Intellectual and Developmental Disabilities, 3, 22–31.
Dusseljee, J., Rijken, P., Cardol, M., Curfs, L., & Groenewegen, P. (2011). Participation in daytime activities among people with mild or moderate intellectual disability. Journal of Intellectual Disability Research, 55, 4–18.
Every Moment Has Potential. (2015). Online training resources for disability support workers. https://www.activesupportresource.net.au
Fincher, R., & Iveson, K. (2008). Planning and diversity in the city: Redistribution, recognition and encounter. Basingstoke: Palgrave Macmillan.
Frawley, P., & Bigby, C. (2015). Reflections on being a first generation self- advocate: Belonging, social connections, and doing things that matter. Journal of Intellectual and Developmental Disability, 40, 254–264.
Fyffe, C., & Raskin, L. (2015). Design and implementation of a Leisure Buddy program. Research and Practice in Intellectual and Developmental Disabilities, 2(1), 83–91. https://doi.org/10.1080/23297018.2015.1004224.
Goffman, E. (1961). Encounters: Two studies in the sociology of interactions. Penguin Books.
Gray, K., Piccinin, A., Keating, J., Taffe, J., Parmenter, T., Hofer, S., … Tonge, B. (2014). Outcomes in young adulthood: Are we achieving community participation and inclusion? Journal of Intellectual Disability Research, 8, 734–745.
Hall, E. (2004). Social geographies of learning disability: Narratives of exclusion and inclusion. Area, 36, 298–306. https://doi.org/10.1111/j.0004-0894.2004.00227.x.
Hall, E. (2013). Making and gifting belonging: Creative arts and people with learning disabilities. Environment and Planning A, 45, 244–262.
Hall, E., & Wilton, R. (2011). Alternative spaces of ‘work’ and inclusion for disabled people. Disability & Society, 26, 867–880. https://doi.org/10.1080/09687599.2011.618742.
Harlan-Simmons, J., Holtz, P., Todd, J., & Mooney, M. (2001). Building social relationships through valued roles: Three older adults and the community membership project. Mental Retardation, 9, 171–180.
Jacobs, J. (1972). The death and life of great American cities. Penguin.
Macadam, A., & Savitch, N. (2015). Staying connected with circles of support. Journal of Dementia Care, 23(1), 32–34.
Mansell, J., & Beadle-Brown, J. (2012). Active support: Enabling and empowering people with intellectual disabilities. London: Jessica Kingsley.
National Disability Insurance Agency. (2017). COAG disability reform council quarterly report. Retrieved from National Disability Insurance Agency. https://ndis.gov.au/medias/documents/h91/hbc/8805559468062/Report-to-the-COAG-Disability-Reform-Council-for-Q1-of-Y5.pdf
Neill, M., & Sanderson, H. (2012). Circles of support and personalisation. http://www.helensandersonassociates.co.uk/media/75948/circlesofsupportandpersonalisation.pdf
O’Brien, J., & Lyle, C. (1987). A framework for accomplishment. Decatur: Responsive Systems Associates.
O’Brien, J., & O’Brien, C. L. (1993). Unlikely alliances: Friendships and people with developmental disabilities. In A. N. Amado (Ed.), Friendships and community connections between people with and without developmental disabilities (pp. 9–40). Baltimore: Brookes.
Peattie, L. (1998). Convivial cities. In M. Douglass & J. Friedmann (Eds.), Cities for citizens: Planning and the rise of civil society in a global age (pp. 247–253). Wiley.
Petroutsou, A., Hassiotis, A., & Afia, A. (2018). Loneliness in people with intellectual and developmental disorders across the lifespan: A systematic review of prevalence and interventions. Journal of Applied Research in Intellectual Disabilities. https://doi.org/10.1111/jar.12432.
Shakespeare, T. (2014). Disability rights and wrongs revisited. Abingdon: Routledge.
Stancliffe, R., Bigby, C., Balandin, S., Wilson, N., & Craig, D. (2015). Transition to retirement and participation in mainstream community groups using active mentoring: A feasibility and outcomes evaluation with a matched comparison group. Journal of Intellectual Disability Research, 59, 703–718.
Supporting Inclusion. (2015). On-line training resources. Translation of findings from ARC Linkage grant, 2015. http://supportinginclusion.weebly.com/
Thomson, A., Bridges, S., Corrins, B., Pham, J., White, C., & Buchanan, A. (2020). The impact of physical activity and sport programs on community participation for people with intellectual disability: A systematic review. Journal of Intellectual & Developmental Disability. https://doi.org/10.3109/13668250.2020.1717070.
United Nations. (1971). Declaration of the rights of mentally retarded persons. https://www.ohchr.org/EN/ProfessionalInterest/Pages/RightsOfMentallyRetardedPersons.aspx
van Alphen, L. M., Dijker, A. J., van den Borne, B. H., & Curfs, L. M. (2010). People with intellectual disability as neighbours: Towards understanding the mundane aspects of social integration. Journal of Community & Applied Social Psychology, 20, 347–362.
Verdonschot, M., De Witte, L., Reichrath, E., Buntinx, W., & Curfs, L. (2009). Community participation of people with an intellectual disability: A review of empirical findings. Journal of Intellectual Disability Research, 53, 303–318.
Vernon, M. (2005). The philosophy of friendship. Hampshire: Palgrave Macmillan.
Wadell, P. J. (1989). Friendship and the moral life. Notre Dame: University of Notre Dame Press.
Warburton, J., Paynter, J., & Petriwskyj, A. (2007). Volunteering as a productive aging activity: Incentives and barriers to volunteering by Australian seniors. Journal of Applied Gerontology, 26, 333–354. https://doi.org/10.1177/0733464807304568.
Ward, K. M., Atkinson, J. P., Smith, C. A., & Windsor, R. (2013). A friendships and dating program for adults with intellectual and developmental disabilities: A formative evaluation. Intellectual and Developmental Disabilities, 51(1), 22–32.
Wiesel, I., & Bigby, C. (2014). Being recognised and becoming known: Encounters between people with and without intellectual disability in the public realm. Environment and Planning A, 46(7), 1754–1769. https://doi.org/10.1068/a46251.
Wiesel, I., & Bigby, C. (2016). Mainstream, inclusionary and convivial places: Locating encounter between people with and without intellectual disability. Geographical Review, 106(2), 201–214.
Wilson, E., & Campain, R. (2020). Fostering employment for people with intellectual disability: The evidence to date. Hawthorn: Centre for Social Impact, Swinburne University of Technology.
Wilson, N. J., Bigby, C., Stancliffe, R. J., Balandin, S., Craig, D., & Anderson, K. (2013). Mentors’ experiences of supporting older adults with intellectual disability to participate in community groups. Journal of Intellectual & Developmental Disability, 38, 344–355.
Wistow, G., Perkins, M., Knapp, M., Bauer, A., & Bonin, E. M. (2016). Circles of Support and personalization: Exploring the economic case. Journal of Intellectual Disabilities, 20(2), 194–207.
Wolfensberger, W. (1972). The principle of normalisation in human services. Toronto: National Institute on Mental Retardation.
World Health Organization. (2001). International classification of functioning, disability and health. Retrieved from http://www.who.int/classifications/icf/en/
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Bigby, C. (2021). Programs and Practices to Support Community Participation of People with Intellectual Disabilities. In: Liamputtong, P. (eds) Handbook of Social Inclusion. Springer, Cham. https://doi.org/10.1007/978-3-030-48277-0_36-1
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