Social inclusion and people with intellectual disability and challenging behaviour: A systematic review

References

• Allen, D., James, W., Evans, J., Hawkins, S., & Jenkins, R. (2005). Positive behavioural support: Definition, current status and future directions. Tizard Learning Disability Review, 10(2), 4–11. doi: 10.1108/13595474200500014
   Google Scholar
• Aman, M.G., Burrow, W.H., & Wolford, P.L. (1995). The Aberrant Behaviour Checklist – Community: Factor validity and effect of subject variables for adults in group homes. American Journal on Mental Retardation, 100, 283–292.
   PubMedGoogle Scholar
• Ashman, A.F., Hulme, P.H., & Suttie, S.J. (1991). The life circumstances of aged people with mental retardation. Australia and New Zealand Journal of Developmental Disabilities, 16, 335–348.
   Google Scholar
• Australian Bureau of Statistics. (2006). General social survey (Cat. No. 4159.0). Canberra: Author.
   Google Scholar
• Australian Institute of Health and Welfare. (2008). Disability in Australia: Intellectual disability (Bulletin No. 67, Cat. No. AUS 110). Canberra: Author.
   Google Scholar
• Balogh, R., Ouellette-Kuntz, H., Bourne, L., Lunsky, Y., & Colantonio, A. (2008). Organising health care services for persons with an intellectual disability. Cochrane Database of Systematic Reviews, 2008(4).
   Google Scholar
• Beadle-Brown, J., Murphy, G., & DiTerlizzi, M. (2009). Quality of life for the Camberwell cohort. Journal of Applied Research in Intellectual Disabilities, 22, 380–390. doi: 10.1111/j.1468-3148.2008.00473.x
   Web of Science ®Google Scholar
• Beadle-Brown, J., Murphy, G., & Wing, L. (2006). The Camberwell cohort 25 years on: Characteristics and changes in skills over time. Journal of Applied Research in Intellectual Disabilities, 19, 317–329. doi: 10.1111/j.1468-3148.2006.00289.x
   Web of Science ®Google Scholar
• Bigby, C. (2008). Known well by no-one: Trends in the informal social networks of middle-aged and older people with intellectual disability five years after moving to the community. Journal of Intellectual & Developmental Disability, 33, 148–157. doi: 10.1080/13668250802094141
   PubMed Web of Science ®Google Scholar
• Bigby, C., & Frawley, P. (2009). Social work practice and intellectual disability: Working to support change. London, UK: Palgrave Macmillan.
   Google Scholar
• Bigby, C., & Wiesel, I. (2011). Encounter as a dimension of social inclusion for people with intellectual disability: Beyond and between community presence and participation. Journal of Intellectual & Developmental Disability, 36, 263–267. doi: 10.3109/13668250.2011.619166
   Web of Science ®Google Scholar
• Bird, F.L., & Luiselli, J.K. (2000). Positive behavioral support of adults with developmental disabilities: Assessment of long-term adjustment and habilitation following restrictive treatment histories. Journal of Behavior Therapy and Experimental Psychiatry, 31, 5–19. doi: 10.1016/S0005-7916(00)00004-5
   PubMedGoogle Scholar
• Brown, L., Shiraga, B., & Kessler, K. (2006). The quest for ordinary lives: The integrated post-school vocational functioning of 50 workers with significant disabilities. Research and Practice for Persons with Severe Disabilities, 31, 93–121.
   Web of Science ®Google Scholar
• Bryman, A. (2008). Social research methods (3rd ed.). New York, NY: Oxford University Press.
   Google Scholar
• Campbell, M. (2007). Staff training and challenging behaviour: Who needs it? Journal of Intellectual Disabilities, 11, 143–156. doi: 10.1177/1744629507076928
   PubMedGoogle Scholar
• Carr, E.G. (2007). The expanding vision of positive behavior support: Research perspectives on happiness, helpfulness, hopefulness. Journal of Positive Behavior Interventions, 9, 3–14. doi: 10.1177/10983007070090010201
   Web of Science ®Google Scholar
• Carr, E.G., Dunlap, G., Horner, R.H., Koegel, R.L., Turnbull, A.P., Sailor, W., … Fox, L. (2002). Positive behavior support: Evolution of an applied science. Journal of Positive Behavior Interventions, 4, 4–16. doi: 10.1177/109830070200400102
   Web of Science ®Google Scholar
• Carr, E.G., Horner, R.H., Turnbull, A.P., Marquis, J.G., Magito-McLaughlin, D., McAtee, M. L., … Doolabh, A. (1999). Positive behavior support for people with developmental disabilities: A research synthesis. Washington, DC: American Association on Mental Retardation.
   Google Scholar
• Carr, E.G., Levin, L., McConnachie, G., Carlson, J.L., Kemp, D.C., & Smith, C.E. (1994). Communication-based intervention for problem behavior. A user's guide for producing positive change. Baltimore, MD: Brookes.
   Google Scholar
• Carr, E.G., Levin, L., McConnachie, G., Carlson, J.I., Kemp, D.C., Smith, C.E., & Magito-McLaughlin, D. (1999). Comprehensive multisituational intervention for problem behavior in the community: Long-term maintenance and social validation. Journal of Positive Behavior Interventions, 1, 5–25. doi: 10.1177/109830079900100103
   Google Scholar
• Clegg, J. (2008). Holding services to account. Journal of Intellectual Disability Research, 52, 581–587. doi: 10.1111/j.1365-2788.2008.01068.x
   PubMed Web of Science ®Google Scholar
• 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. doi: 10.1111/j.1468-3148.2008.00458.x
   Web of Science ®Google Scholar
• Commonwealth of Australia. (2009a). A stronger, fairer Australia. Canberra: Department of the Prime Minister and Cabinet.
   Google Scholar
• Commonwealth of Australia. (2009b). A compendium of social inclusion indicators: How's Australia faring? Canberra: Australian Social Inclusion Board, Department of the Prime Minister and Cabinet.
   Google Scholar
• Commonwealth of Australia. (2009c). Australian Public Service social inclusion policy design and delivery toolkit. Canberra: Social Inclusion Unit, Department of the Prime Minister and Cabinet.
   Google Scholar
• Commonwealth of Australia. (2010). Social inclusion in Australia: How Australia is faring. Canberra: Australian Social Inclusion Board, Department of the Prime Minister and Cabinet.
   Google Scholar
• Cragg, R., & Look, R. (1992). Compass: A multi-perspective evaluation of quality in home life. Birmingham, UK: Cragg.
   Google Scholar
• Dagnan, D., Trout, A., Jones, J., & McEvoy, J. (1996). Changes in quality of life following a move from hospital to a small community unit for people with learning disabilities and challenging behaviour. British Journal of Mental Subnormality, 42, 125–135.
   Google Scholar
• Department of Health. (1993). Services for people with learning disabilities and challenging behaviour or mental health needs: Report of a Project Group (Chairman: Prof J L Mansell). London: Her Majesty's Stationery Office.
   Google Scholar
• Department of Health. (2007). Services for people with learning disabilities and challenging behaviour or mental health needs: Report of a project group (Chairman: Prof J L Mansell). London: Department of Health Social Care Policy and Innovation.
   Google Scholar
• DiTerlizzi, M. (1994). Life history: The impact of a changing service provision on an individual with learning disabilities. Disability & Society, 9, 501–517. doi: 10.1080/09687599466780481
   Google Scholar
• Emerson, E. (2001). Challenging behaviour: Analysis and intervention in people with severe intellectual disabilities (2nd ed.). Cambridge, UK: Cambridge University Press. doi: 10.1017/CBO9780511543739
   Google Scholar
• Emerson, E., Beasley, F., Offord, G., & Mansell, J. (1992). Specialised housing for people with seriously challenging behaviours. Journal of Mental Deficiency Research, 36, 291–307.
   Google Scholar
• Emerson, E., & Hatton, C. (1996). Deinstitutionalization in the UK and Ireland: Outcomes for service users. Journal of Intellectual & Developmental Disabilities, 21, 17–37. doi: 10.1080/13668259600033021
   Web of Science ®Google Scholar
• Emerson, E., Malam, S., Davies, I., & Spencer, K. (2005). Adults with learning disabilities in England, 2003/04. London: NHS Health and Social Care Information Centre.
   Google Scholar
• Emerson, E., Robertson, J., Gregory, N., Hatton, C., Kessissoglou, S., Hallam, A., … Netten, A. (2000). Quality and costs of community-based residential supports, village communities, and residential campuses in the United Kingdom. American Journal on Mental Retardation, 105, 81–102.
   PubMedGoogle Scholar
• Felce, D., Lowe, K., Beecham, J., & Hallam, A. (2000). Exploring the relationships between costs and quality of services for adults with severe intellectual disabilities and the most severe challenging behaviours in Wales: A multivariate regression analysis. Australia and New Zealand Journal of Developmental Disabilities, 25, 307–326.
   Google Scholar
• Felce, D., & Perry, J. (1995). The extent of support for ordinary living provided in staffed housing: The relationship between staffing levels, resident characteristics, staff: resident interactions and resident activity patterns. Social Science & Medicine, 40, 799–810. doi: 10.1016/0277-9536(94)00152-J
   PubMed Web of Science ®Google Scholar
• Felce, D., Perry, J., Romeo, R., Robertson, J., Meek, A., Emerson, E., & Knapp, M. (2008). Outcomes and costs of community living: Semi-independent living and fully staffed group homes. American Journal on Mental Retardation, 113, 87–101.
   PubMedGoogle Scholar
• Felce, D., & Toogood, S. (1988). Close to home: A local housing service and its impact on the lives of nine adults with severe and profound mental handicaps. London, UK: BIMH Publications.
   Google Scholar
• Forrester-Jones, R., Carpenter, J., Coolen-Schrijner, P., Cambridge, P., Tate, A., Beecham, J., … Wooff, D. (2006). The social networks of people with intellectual disability living in the community 12 years after resettlement from long-stay hospitals. Journal of Applied Research in Intellectual Disabilities, 19, 285–295. doi: 10.1111/j.1468-3148.2006.00263.x
   Web of Science ®Google Scholar
• Gold, M.W. (1978). Try another way training manual. Austin, TX: Marc Gold & Associates.
   Google Scholar
• Golding, L., Emerson, E., & Thornton, A. (2005). An evaluation of specialized community-based residential supports for people with challenging behaviour. Journal of Intellectual Disabilities, 9, 145–154. doi: 10.1177/1744629505053929
   PubMedGoogle Scholar
• Gray, M., Platt, D., & Webb, S.A. (2009). Evidence-based social work practice: A critical stance. London, UK: Routledge.
   Google Scholar
• Gustafsson, C., Öjehagen, A., Hansson, L., Sandlund, M., Nyström, M., Glad, J., … Fredriksson, M. (2009). Effects of psychosocial interventions for people with intellectual disabilities and mental health problems: A survey of systematic reviews. Research on Social Work Practice, 19, 281–290. doi: 10.1177/1049731508329403
   Web of Science ®Google Scholar
• Hall, E. (2005). The entangled geographies of social exclusion/inclusion for people with learning disabilities. Health & Place, 11, 107–115. doi: 10.1016/j.healthplace.2004.10.007
   PubMed Web of Science ®Google Scholar
• Hassiotis, A.A., & Hall, I. (2008). Behavioural and cognitive-behavioural interventions for outwardly-directed aggressive behaviour in people with learning disabilities. Cochrane Database of Systematic Reviews, 2008(3). doi: 10.1002/14651858.CD003406.pub3
   Google Scholar
• Jensen, C.C., McConnachie, G., & Pierson, T. (2001). Long-term multicomponent intervention to reduce severe problem behavior: A 63-month evaluation. Journal of Positive Behavior Interventions, 3, 225–236, 250. doi: 10.1177/109830070100300404
   Google Scholar
• Kozma, A., Mansell, J., & Beadle-Brown, J. (2009). Outcomes in different residential settings for people with intellectual disability: A systematic review. American Journal on Intellectual and Developmental Disabilities, 114, 193–222. doi: 10.1352/1944-7558-114.3.193
   PubMedGoogle Scholar
• Lakin, K.C., & Stancliffe, R.J. (2007). Residential supports for persons with intellectual and developmental disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 13, 151–159. doi: 10.1002/mrdd.20148
   PubMedGoogle Scholar
• LaVigna, G.W., & Willis, T.J. (2005a). Episodic severity: An overlooked dependent variable in the application of behavior analysis to challenging behavior. Journal of Positive Behavior Interventions, 7, 47–54. doi: 10.1177/10983007050070010501
   Web of Science ®Google Scholar
• LaVigna, G.W., & Willis, T.J. (2005b). A positive behavioural support model for breaking the barriers to social and community inclusion. Tizard Learning Disability Review, 10(2), 16–23. doi: 10.1108/13595474200500016
   Google Scholar
• Lowe, K., Felce, D., & Blackman, D. (1996). Challenging behaviour: The effectiveness of specialist support teams. Journal of Intellectual Disability Research, 40, 336–347.
   PubMedGoogle Scholar
• Magito-McLaughlin, D., Mullen-James, K., Anderson-Ryan, K., & Carr, E.G. (2002). Best practices: Finding a new direction for Christos. Journal of Positive Behavior Interventions, 4, 157–165. doi: 10.1177/10983007020040030401
   Google Scholar
• Mansell, J., & Beadle-Brown, J. (2012). Active support: Enabling and empowering people with intellectual disabilities. London, UK: Kingsley.
   Google Scholar
• Mansell, J., Beadle-Brown, J., Macdonald, S., & Ashman, B. (2003). Functional grouping in residential homes for people with intellectual disabilities. Research in Developmental Disabilities, 24, 170–182. doi: 10.1016/S0891-4222(03)00027-1
   PubMed Web of Science ®Google Scholar
• Mansell, J., Beadle-Brown, J., Whelton, B., Beckett, C., & Hutchinson, A. (2008). Effect of service structure and organization on staff care practices in small community homes for people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 21, 398–413. doi: 10.1111/j.1468-3148.2007.00410.x
   Web of Science ®Google Scholar
• Mansell, J., & Elliott, T.E. (1996). Active support measure. Canterbury, UK: Tizard Centre.
   Google Scholar
• Mansell, J., Felce, D., de Kock, U., & Jenkins, J. (1982). Increasing purposeful activity of severely and profoundly mentally-handicapped adults. Behaviour Research and Therapy, 20, 593–604. doi: 10.1016/0005-7967(82)90038-9
   PubMed Web of Science ®Google Scholar
• Mansell, J., McGill, P., & Emerson, E. (2001). Development and evaluation of innovative residential services for people with severe intellectual disability and serious challenging behavior. In Glidden L.M. (Ed.), International review of research in mental retardation. (Vol. 24, pp. 245–298). New York, NY: Academic Press. doi: 10.1016/S0074-7750(01)80011-2
   Google Scholar
• McClean, B., Grey, I.M., & McCracken, M. (2007). An evaluation of positive behavioural support for people with very severe challenging behaviours in community-based settings. Journal of Intellectual Disabilities, 11, 281–301. doi: 10.1177/1744629507080791
   PubMedGoogle Scholar
• McConkey, R., & Collins, S. (2010). Using personal goal setting to promote the social inclusion of people with intellectual disability living in supported accommodation. Journal of Intellectual Disability Research, 54, 135–143. doi: 10.1111/j.1365-2788.2009.01224.x
   PubMed Web of Science ®Google Scholar
• Milton Keynes Primary Care Trust. (2002). Critical appraisal toolkit for qualitative research. Milton Keynes, UK: Author. Retrieved August 1, 2012, fromhttp://www.hello.nhs.uk/documents/CAT5-Qualitative_Research.pdf
   Google Scholar
• Murphy, G. (2009). Challenging behavior: A barrier to inclusion? Journal of Policy and Practice in Intellectual Disabilities, 6, 89–90. doi: 10.1111/j.1741-1130.2009.00216.x
   Web of Science ®Google Scholar
• Murphy, G., Holland, A., Fowler, P., & Reep, J. (1991). MIETS: A service option for people with mild mental handicaps and challenging behaviour or psychiatric problems: 1. Philosophy, service, and service users. Mental Handicap Research, 4, 41–66. doi: 10.1111/j.1468-3148.1991.tb00090.x
   Google Scholar
• Myrbakk, E., & von Tetzchner, S. (2008). The prevalence of behavior problems among people with intellectual disability living in community settings. Journal of Mental Health Research in Intellectual Disabilities, 1, 205–222. doi: 10.1080/19315860802115607
   Web of Science ®Google Scholar
• Nihira, K., Leland, H., & Lambert, N. (1993). Adaptive Behavior Scale – Residential and Community. Austin, TX: Pro-Ed.
   Google Scholar
• O'Brien, J., & O'Brien, C. (1987). A framework for accomplishment. Decatur, GA: Responsive Systems Associates.
   Google Scholar
• O'Brien, J., & O'Brien, C. L. (Eds.). (2002). Implementing person-centred planning: Voices of experience (Vol. II). Toronto, Canada: Inclusion Press.
   Google Scholar
• Pawson, R. (2006). Evidence-based policy: A realist perspective. London, UK: Sage.
   Google Scholar
• Prangnell, S. J. (2010). Behavioural interventions for self injurious behaviour: A review of recent evidence (1998–2008). British Journal of Learning Disabilities, 38, 259–270. doi: 10.1111/j.1468-3156.2009.00598.x
   Google Scholar
• Raynes, N.V., Sumpton, R.C., & Flynn, M.C. (1987). Homes for mentally handicapped people. London, UK: Tavistock.
   Google Scholar
• Raynes, N.V., Sumpton, R.C., & Pettipher, C. (1989). The Index of Community Involvement. Manchester, UK: Department of Social Policy and Social Work, The University of Manchester.
   Google Scholar
• Raynes, N.V., Wright, K., Shiell, A., & Pettipher, C. (1994). The cost and quality of community residential care: An evaluation of the services for adults with learning disabilities. London, UK: Fulton.
   Google Scholar
• Reinders, J.S. (2002). The good life for citizens with intellectual disability [Editorial]. Journal of Intellectual Disability Research, 46, 1–5. doi: 10.1046/j.1365-2788.2002.00386.x
   PubMed Web of Science ®Google Scholar
• Robertson, J., Emerson, E., Gregory, N., Hatton, C., Kessissoglou, S., Hallam, A., & Linehan, C. (2001). Social networks of people with mental retardation in residential settings. Mental Retardation, 39, 201–214.
   PubMedGoogle Scholar
• Robertson, J., Emerson, E., Pinkney, L., Caesar, E., Felce, D., Meek, A., … Hallam, A. (2004). Quality and costs of community-based residential supports for people with mental retardation and challenging behaviour. American Journal on Mental Retardation, 109, 332–344.
   PubMedGoogle Scholar
• Saxby, H., Thomas, M., Felce, D., & de Kock, U. (1986). The use of shops, cafes and public houses by severely and profoundly mentally retarded adults. British Journal of Mental Subnormality, 32, 82–92.
   Google Scholar
• Scotti, J.R., Evans, I.M., Meyer, L.H., & Walker, P. (1991). A meta-analysis of intervention research with problem behavior: Treatment validity and standards of practice. American Journal on Mental Retardation, 96, 233–256.
   PubMedGoogle Scholar
• Schalock, R.L., Brown, I., Brown, R., Cummins, R.A., Felce, D., Matikka, L., … Parmenter, T. (2002). Conceptualization, measurement, and application of quality of life for persons with intellectual disabilities: Report of an international panel of experts. Mental Retardation, 40, 457–470. doi: 10.1352/0047-6765(2002)040 < 0457:CMAAOQ > 2.0.CO;2
   PubMedGoogle Scholar
• Schalock, R., Harper, R., & Benung, T. (1989). Community integration of mentally retarded adults: Community placement and program success. American Journal of Mental Deficiency, 85, 478–488.
   Google Scholar
• Swift, P., & Mattingly, M. (2009). A Life in the Community: An action research project promoting citizenship for people with high support needs. London, UK: Foundation for People with Learning Disabilities.
   Google Scholar
• Thompson, C.L., & Reid, A. (2002). Behavioural symptoms among people with severe and profound intellectual disabilities: A 26-year follow-up study. British Journal of Psychiatry, 181, 67–71. doi: 10.1192/bjp.181.1.67
   PubMedGoogle Scholar
• Thompson, T., Robinson, J., Dietrich, M., Farris, M., & Sinclair, V. (1996). Architectural features and perceptions of community residences for people with mental retardation. American Journal on Mental Retardation, 101, 292–314.
   PubMedGoogle Scholar
• Tracy, E., & Whittaker, J. (1990). The social network map: Assessing social support in clinical practice. Families in Society, 71, 461–470.
   Web of Science ®Google Scholar
• Tyrer, P., Oliver-Africano, P.C., Ahmed, Z., Bouras, N., Cooray, S., Deb, S., … Crawford, M. (2008). Risperidone, haloperidol, and placebo in the treatment of aggressive challenging behaviour in patients with intellectual disability: A randomised controlled trial. The Lancet, 371, 57–63. doi: 10.1016/S0140-6736(08)60072-0
   PubMed Web of Science ®Google Scholar
• United Nations. (2006). Convention on the Rights of Persons with Disabilities. Retrieved August 20, 2007, from http://www.un.org/disabilities
   Google Scholar
• Verdonschot, M.M.L., de Witte, L.P., Reichrath, E., Buntinx, W.H.E., & Curfs, L.M.G. (2009). Community participation of people with an intellectual disability: A review of empirical findings. Journal of Intellectual Disability Research, 53, 303–318. doi: 10.1111/j.1365-2788.2008.01144.x
   PubMed Web of Science ®Google Scholar
• Wightman, C. (2009). Connecting people: The steps to making it happen. London, UK: Foundation for People with Learning Disabilities.
   Google Scholar
• Willis, T.J., LaVigna, G., & Donnellan, A.M. (1993). Behavior Assessment Report and Intervention Plan: Evaluation instrument. Los Angeles, CA: Institute for Applied Behavior Analysis.
   Google Scholar
• World Health Organization. (2001). International Classification of Functioning, Disability and Health (ICF). Geneva, Switzerland: Author.
   Google Scholar
• Young, L. (2006). Community and cluster centre residential services for adults with intellectual disability: Long-term results from an Australian-matched sample. Journal of Intellectual Disability Research, 50, 419–431. doi: 10.1111/j.1365-2788.2006.00788.x
   PubMed Web of Science ®Google Scholar
• Young, L., Sigafoos, J., Suttie, J., Ashman, A., & Grevell, P. (1998). Deinstitutionalisation of persons with intellectual disabilities: A review of Australian studies. Journal of Intellectual & Developmental Disabilities, 23, 155–170. doi: 10.1080/13668259800033661
   Web of Science ®Google Scholar