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

Journal of Intellectual and Developmental Disability

Volumn 37, Issue 4, 2012, Pages 360-374

  Bigby, Christine ^a  

^a LA TROBE UNIVERSITY   (Australia)

Author keywords

Challenging behaviour; Intellectual disability; Participation; Social inclusion

Indexed keywords

CONDUCT DISORDER; DISABLED PERSON; EVIDENCE BASED MEDICINE; HUMAN; INTELLECTUAL IMPAIRMENT; PSYCHOLOGICAL ASPECT; REVIEW; SEVERITY OF ILLNESS INDEX; SOCIAL BEHAVIOR; SOCIAL ISOLATION; SOCIAL PARTICIPATION; SOCIAL SUPPORT;

CONDUCT DISORDER; DISABLED PERSONS; EVIDENCE-BASED MEDICINE; HUMANS; INTELLECTUAL DISABILITY; SEVERITY OF ILLNESS INDEX; SOCIAL IDENTIFICATION; SOCIAL ISOLATION; SOCIAL PARTICIPATION; SOCIAL SUPPORT;

EID: 84869468619     PISSN: 13668250     EISSN: 14699532     Source Type: Journal    
DOI: 10.3109/13668250.2012.721878     Document Type: Review

References (93)

1. Allen, D., James, W., Evans, J., Hawkins, S., & Jenkins, R. (2005). Positive behavioural support: Defi nition, current status and future directions. Tizard Learning Disability Review, 10 (2), 4 - 11. doi:10.1108/ 13595474200500014
2. 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 .
3. 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 .
4. Australian Bureau of Statistics. (2006). General social survey (Cat. No. 4159.0). Canberra: Author .
5. Australian Institute of Health and Welfare. (2008). Disability in Australia: Intellectual disability (Bulletin No. 67, Cat. No. AUS 110). Canberra: Author .
6. 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) .
7. 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
8. 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 (Pubitemid 44759574)
9. Bigby, C. (2008). Known well by no-one: Trends in the informal social networks of middle-aged and older people with intellectual disability fi ve years after moving to the community. Journal of Intellectual & Developmental Disability, 33, 148 - 157. doi:10.1080/13668250802094141 (Pubitemid 351882293)
10. Bigby, C., & Frawley, P. (2009). Social work practice and intellectual disability: Working to support change. London, UK: Palgrave Macmillan .
11. 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:10.31 09/13668250.2011.619166
12. Bird, F.L., & Luiselli, J.K. (2000). Positive behavioral support of adults with developmental disabilities: Assessment of longterm 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 (Pubitemid 30645673)
13. Brown, L., Shiraga, B., & Kessler, K. (2006). The quest for ordinary lives: The integrated post-school vocational functioning of 50 workers with signifi cant disabilities. Research and Practice for Persons with Severe Disabilities, 31, 93 - 121 . (Pubitemid 44393176)
14. Bryman, A. (2008). Social research methods (3rd ed.). New York, NY: Oxford University Press .
15. Campbell, M. (2007). Staff training and challenging behaviour: Who needs it? Journal of Intellectual Disabilities, 11, 143 - 156. doi:10.1177/ 1744629507076928 (Pubitemid 46995301)
16. 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
17. 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
18. 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 develop mental disabilities: A research synthesis. Washington, DC: American Association on Mental Retardation .
19. 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.
20. 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
21. Clegg, J. (2008). Holding services to account. Journal of Intellectual Disability Research, 52, 581 - 587. doi:10.1111/j.1365-2788.2008.01068.x (Pubitemid 351844109)
22. Clement, T., & Bigby, C. (2009). Breaking out of a distinct social space: Refl ections 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
23. Commonwealth of Australia. (2009a). A stronger, fairer Australia. Canberra: Department of the Prime Minister and Cabinet.
24. 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 .
25. 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 .
26. Commonwealth of Australia. (2010). Social inclusion in Australia: How Australia is faring. Canberra: Australian Social Inclusion Board, Department of the Prime Minister and Cabinet .
27. Cragg, R., & Look, R. (1992). Compass: A multi-perspective evaluation of quality in home life. Birmingham, UK: Cragg .
28. 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 .
29. 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.
30. 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 .
31. DiTerlizzi, M. (1994). Life history: The impact of a changing service provision on an individual with learning disabilities. Disability & Society, 9, 501 - 517. doi:10.1080/096875994 66780481
32. 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
33. Emerson, E., Beasley, F., Offord, G., & Mansell, J. (1992). Specialised housing for people with seriously challenging behaviours. Journal of Mental Defi ciency Research, 36, 291 - 307 .
34. 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 (Pubitemid 26180844)
35. 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 .
36. 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 . (Pubitemid 30413395)
37. 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 .
38. 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
39. 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 .
40. 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 .
41. 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 (Pubitemid 44759571)
42. Gold, M.W. (1978). Try another way training manual. Austin, TX: Marc Gold & Associates .
43. 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 (Pubitemid 40895253)
44. Gray, M., Platt, D., & Webb, S.A. (2009). Evidence-based social work practice: A critical stance. London, UK: Routledge .
45. Gustafsson, C., Öjehagen, A., Hansson, L., Sandlund, M., Nystr öm, 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
46. 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 (Pubitemid 40039010)
47. Hassiotis, A.A., & Hall, I. (2008). Behavioural and cognitivebehavioural interventions for outwardly-directed aggressive behaviour in people with learning disabilities. Cochrane Database of Systematic Reviews, 2008 (3). doi:10.1002/14651858.CD003406.pub3
48. 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
49. 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
50. 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 (Pubitemid 47092769)
51. 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 (Pubitemid 40101555)
52. 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
53. Lowe, K., Felce, D., & Blackman, D. (1996). Challenging behaviour: The effectiveness of specialist support teams. Journal of Intellectual Disability Research, 40, 336 - 347 . (Pubitemid 26317068)
54. 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
55. Mansell, J., & Beadle-Brown, J. (2012). Active support: Enabling and empowering people with intellectual disabilities. London, UK: Kingsley .
56. Mansell, J., Beadle-Brown, J., Macdonald, S., & Ashman, B. (2003). Functional grouping in residential homes for people with intellectual disabilities. Research in Develop mental Disabi lities, 24, 170 - 182. doi:10.1016/S0891-4222(03)00027-1 (Pubitemid 36549017)
57. 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
58. Mansell, J., & Elliott, T.E. (1996). Active support measure. Canterbury, UK: Tizard Centre .
59. Mansell, J., Felce, D., de Kock, U., & Jenkins, J. (1982). Increasing purposeful activity of severely and profoundly mentallyhandicapped adults. Behaviour Research and Therapy, 20, 593 - 604. doi:10.1016/0005-7967(82)90038-9 (Pubitemid 13205562)
60. 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 L.M. Glidden (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 (Pubitemid 33804636)
61. 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 (Pubitemid 47308356)
62. 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
63. Milton Keynes Primary Care Trust. (2002). Critical appraisa ltoolkit for qualitative research. Milton Keynes, UK: Author. Retrieved August 1, 2012, from http://www.hello.nhs.uk/documents/CAT5-Qualitative-Research.pdf
64. 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
65. 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
66. 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
67. Nihira, K., Leland, H., & Lambert, N. (1993). Adaptive Behavior Scale - Residential and Community. Austin, TX: Pro-Ed .
68. O Brien, J., & O'Brien, C. (1987). A framework for accomplishment. Decatur, GA: Responsive Systems Associates .
69. O'Brien, J., & O'Brien, C. L. (Eds.). (2002). Implementing personcentred planning: Voices of experience (Vol. II). Toronto, Canada: Inclusion Press .
70. Pawson, R. (2006). Evidence-based policy: A realist perspective. London, UK: Sage .
71. 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
72. Raynes, N.V., Sumpton, R.C., & Flynn, M.C. (1987). Homes for mentally handicapped people. London, UK: Tavistock .
73. 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 .
74. 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 .
75. 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 (Pubitemid 34121264)
76. 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 . (Pubitemid 33599018)
77. 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 mentalretardation and challenging behaviour. American Journal on Mental Retardation, 109, 332 - 344 . (Pubitemid 44132745)
78. 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 .
79. 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 .
80. 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:CMAAOQ2.0.CO;2
81. Schalock, R., Harper, R., & Benung, T. (1989). Community integration of mentally retarded adults: Community placement and program success. American Journal of Mental Defi ciency, 85, 478 - 488 .
82. 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 .
83. 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 (Pubitemid 34717841)
84. 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 .
85. Tracy, E., & Whittaker, J. (1990). The social network map: Assessing social support in clinical practice. Families in Society, 71, 461 - 470 .
86. 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
87. United Nations. (2006). Convention on the Rights of Persons with Disabilities. Retrieved August 20, 2007, from http://www.un.org/disabilities
88. 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 fi ndings. Journal of Intellectual Disability Research, 53, 303 - 318. doi:10.1111/j.1365-2788.2008. 01144.x
89. Wightman, C. (2009). Connecting people: The steps to making it happen. London, UK: Foundation for People with Learning Disabilities .
90. 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 .
91. World Health Organization. (2001). International Classifi cation of Functioning, Disability and Health (ICF). Geneva, Switzerland: Author .
92. 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
93. 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 (Pubitemid 28339839)