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Senior Practitioner – DisabilityIncluding people with behaviours of concern in the social inclusion agendaReport by Professor Christine BigbyLa Trobe University

August 2010

Department of Human Services

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Front cover: painting by Elica Petrovska winner of Having a Say Conference ‘Freedom and Respect’ Art Prize (2010).

Including people with behaviours of concern in the social inclusion agendaA report prepared for the Office of the Senior Practitioner

Professor Christine BigbySchool of Social Work and Social Policy, La Trobe University

© Copyright State of Victoria, Department of Human Services, 2010.

Published by the Victorian Government Department of Human Services, Melbourne, Victoria.

This publication is copyright. No part may be reproduced by any process except in accordance with the provisions of the Copyright Act 1968. Authorised by the Victorian Government, 50 Lonsdale Street, Melbourne.

August 2010 (KV885)

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ContentsIncluding people with behaviours of concern in the social inclusion agenda...........................1A brief overview of people with behaviours of concern...............................................................2The evidence: behaviours of concern and social inclusion................................................................2Limited research has measured social inclusion...............................................................................2Possibilities for social inclusion of people with behaviours of concern..............................................3Poor definitions and inconsistent measurements of social inclusion.................................................5Failure to theorise social inclusion strategies for people with behaviours of concern........................6

Summarising implications and potential directions.....................................................................8Recommendations for action.......................................................................................................10References..................................................................................................................................... 12Appendix 1: Defining features of positive behaviour support...................................................16Appendix 2: Summary of research reporting community participation outcomes for people with challenging behaviour........................................................................................18Appendices references.................................................................................................................... 25

Including people with behaviours of concern in the social inclusion agenda‘An inclusive Australia is one where all Australians have the capabilities, opportunities, responsibilities and resources to learn, work, connect with others and have a say’

(Commonwealth of Australia, 2009a, p. 2)

Social inclusion occupies a central place in Australian social policy and, as Julia Gillard points out, it is about ‘every Australian, wherever and whoever they are’ (Commonwealth of Australia, 2009b, p. 1). Similarly social inclusion is central to disability policy, whereby, as a signatory to the United Nations Convention on the Rights of People with Disabilities, the Australian federal and state governments are committed to take effective and appropriate measures to facilitate the full inclusion and participation of people with a disability in the community.

People with intellectual disability are among the most disadvantaged and excluded in society and the risks of exclusion are compounded for those who have behaviours of concern as well as intellectual disability (Kozma, Mansell & Beadle-Brown, 2009; Myrbakk & Von Tetzcnner, 2008). This paper reviews the evidence about the social inclusion of people with behaviours of concern and, within the context of the current policy agenda, considers the implications for research, policy and practice to address their disadvantaged position. It is based on a systematic review of the empirical literature about social inclusion and people with behaviours of concern (Bigby, 2010). Its focus is adults with more severe intellectual disability who use the disability service system rather than those with milder intellectual disabilities who are more likely to be involved with the criminal justice system.

Including people with behaviours of concern in the social inclusion agenda 1

A brief overview of people with behaviours of concernThe most commonly used definitions of behaviours of concern are derived from that developed by Emerson and colleagues in the mid 1980s.

‘Severely challenging behaviors refer to behavior of such an intensity, frequency or duration that the physical safety of the person or others is likely to be placed in serious jeopardy or behavior which is likely to seriously limit or deny access to and use of ordinary community facilities’

(Emerson et al., 1987 cited in Department of Health, 2007, p. 6)

The types of behaviours most commonly associated with this label are: physical aggression; destruction of property or aspects of the environment; self-injury; and inappropriate sexual behaviour, which typically coexist in people with more severe behaviours of concern (Felce et al., 2000). The prevalence of behaviours of concern is mediated by age (more frequent among young adults), place of residence (more common in institutional settings) and degree of disability (most common in people with more severe intellectual disability) (Murphy, 2009). The most commonly used prevalence figure is Emerson’s 2001 estimate of between 10 and 15 per cent of people with intellectual disability.

Most adults with severe behaviours of concern live in ‘out-of-home’ care (Felce et al., 2000), where many are subject to restrictive practices (Emerson et al., 2000). They are a diverse group and ‘behaviours of concern’ is not a precise or diagnostically useful label that can be associated with specific management for a person without knowledge of their individual circumstances and history (Tyrer et al., 2008). Most research points to the long-term persistent nature of behaviours of concern, irrespective of changed residential settings (Murphy, 2009). This chronicity is significant and means that support services must have a role in managing its impact, and supporting a person’s quality of life despite their behaviour (Department of Health, 1993, 2007; Emerson et al., 1992).

The evidence: behaviours of concern and social inclusionFour key themes emerged from the literature reviewed: (1) limited research has attempted to measure social inclusion for people with behaviours of concern; (2) research has identified the potential for people with behaviours of concern to be socially included; (3) social inclusion has been poorly defined and measured for people with behaviours of concern; and (4) there has been a failure to theorise and consider how to tackle social inclusion for people with behaviours of concern.

Limited research has measured social inclusionThe findings of this review support the conclusion reached by Murphy (2009) that little research has investigated the social inclusion of people with behaviours of concern, and by Verdonschotet et al. (2009), that research about community participation has primarily focused on people with mild intellectual disability. Few studies have a central focus on the inclusion of people with behaviours of concern. Where social inclusion has been investigated, it has usually been as a peripheral aspect of studies that have as the main focus the broader concept of quality of life or, alternatively,

2 Including people with behaviours of concern in the social inclusion agenda

aspects of inclusion have been considered as one part of broader descriptions about life experiences.

Although people with behaviours of concern have often been identified as a separate group in the large body of research about deinstitutionalisation, domains relevant to their social inclusion have not been reported separately from other participants (Emerson & Hatton, 1996; Kozma et al., 2009; Young et al., 1998). Rather it has been changes to the nature and frequency of behaviours of concern that are reported separately. This reflects a longstanding emphasis on the reduction of behaviours of concern, and an implicit assumption that until this occurs other outcomes cannot be achieved (the sense that people have to be made ready for social inclusion) (Campbell, 2007; Carr et al., 1999).

A further issue is the applicability in everyday practice of much of the research that has evaluated outcomes of specific programs or interventions for people with behaviours of concern. Most such studies have been conducted under experimental conditions without longer term follow up, and therefore reveal little about the conditions necessary to sustain outcomes in the messy real world of the person’s own home or long-term effectiveness (Carr et al., 1999a, b).

Possibilities for social inclusion of people with behaviours of concernResearch has demonstrated that on various dimensions of social inclusion outcomes for people with severe behaviours of concern can be improved with intensive, carefully executed planning and support (see Appendix 2, studies 1–8). However, as most deinstitutionalisation studies do not report outcomes separately for people with behaviours of concern, there is little evidence as to whether this group experience similar benefits, such as increased social network size or greater frequency and variety of community activities, that are reported for the larger population of people with intellectual disability. This poses the question whether people with behaviours of concern account for some of the significant variability of resident outcomes found within and between accommodation services. Findings reported by Felce et al. (2000) suggests that residents with higher levels of behaviours of concern in small group homes do experience less frequent community activities compared with other residents. There are also some global indications that people with behaviours of concern may not have benefitted equally from deinstitutionalisation. They are likely to be under represented in earlier studies because some policymakers considered them unsuitable for community living, they were among the last to be relocated and their placements were more likely to break down (Department of Health, 1993; Lakin et al., 1983; Schalock, Harper & Benung, 1981).

Young’s (2006) Australian study suggests that people with challenging behaviour do benefit from increased community presence when they move from an institution. Her comparison of matched pairs of people with behaviours of concern relocated to community small group homes and cluster settings in Queensland found that both groups experienced increased objective quality of life, but the group home residents had a greater increase on the dimension of community presence. The six descriptive studies identified in the review (see Appendix 2, studies 1, 3, 5–8) all reported positive improvements on various dimensions of social inclusion following a move to the community. It should be noted nevertheless that these studies did not report on ‘standard’ deinstitutionalisation programs; research participants were selected on the basis of being those with the most severe behaviours of concern and the programs were demonstration projects, designed and resourced intensively by specialists. The descriptions of these programs suggest a focus on engagement in meaningful activities and social inclusion should be both a means as well as an end of intervention.


Saxby et al.’s (1986) study of people with behaviours of concern reflects the conclusions reached by the large body of both qualitative and quantitative research about people with intellectual disability in general, that community presence does not equate with community participation, and few people have relationships with others outside the distinct social space of family, staff and other residents (Clement & Bigby, 2009a; Hatton & Emerson, 1996; Kozma et al., 2009). Saxby et al.’s study suggests too that despite some gains when people with behaviours of concern move to small group community living, their inclusion is far from that of the ‘ordinary life’ described in the social policy literature. This study also illustrates the importance of considering normative comparisons and avoiding confounding community presence with community participation. The use of shops and community facilities, for instance, is an important dimension of social inclusion, which, for people with intellectual disability, just as for other community members, may involve only momentary social interactions, but is unlikely to lead to the formation of friendships (Clement & Bigby, 2009b; Walker, 1999).

Several studies demonstrate the benefits in terms of social inclusion of people with behaviours of concern of not being congregated with other residents with similar behaviours (Mansell et al., 2003; Robertson et al., 2004), while Lowe et al. (1996) show the variable impact of specialist services on outcomes, suggesting that attention must be given to the quality of specialist services.

Language and cultural differences are evident between the studies from UK and US, but irrespective of location they tend to reach similar conclusions about the components necessary to support inclusion for people with behaviours of concern, and indicate these are similar to the components necessary to support other aspects of quality of life, particularly engagement in meaningful activity in the home. The principles of practice, support and service system components identified in these studies have already been well articulated by the leading researchers in this field (Carr et al., 2002; Department of Health, 2007; LaVigna & Thomas, 2005) (see Appendix 1).

The paucity of direct research on social inclusion and people with behaviours of concern reinforces the importance of drawing on the broader substantive bodies of empirical and theoretical knowledge about social inclusion and people with intellectual disability in general. For example:

The UK and US deinstitutionalisation and community living literature that has demonstrated the potential for people with behaviours of concern to live in small-scale community settings, the beneficial outcomes for people with intellectual disability of moving from congregate to small group living, the variability in costs, quality and outcomes of small dispersed community residential services, and has begun to tease out the complexity of practice and organisational factors that impact on resident outcomes (Felce et al., 2008; Lakin & Stancliffe, 2007; Mansell et al., 2008). Consistently this literature reports increased activities in the community for residents who move to dispersed group homes and some also reports increased social networks. It suggests that social interactions with community members tends to be fleeting and people with intellectual disability develop few new relationships with community members without disabilities (Bigby, 2008; Clement & Bigby, 2009a, 2009b; Forrester-Jones et al., 2006; Robertson et al., 2001; Todd, Evans & Beyer, 1990).

The Applied Behavioural Analysis, and more recently the Positive Behaviour Support literatures that have demonstrated the application of principles from behavioural psychology can reduce the frequency and severity of behaviours of concern, and begun to theorise and investigate the application and validity of these principles to community settings and the efficacy of models for multi-component interventions (Allen, 2005; Carr et al., 1999a, b; Carr et al., 2002; LaVigna & Thomas, 2005).


The medical literature that has demonstrated the minimal effect of antipsychotic medication as a means of managing behaviours of concerns in the absence of a diagnosed mental illness (Tyrer et al., 2008).

The supported employment literature that has demonstrated the potential for employment in community settings of people with severe intellectual disability (Brown, Shirga & Kessler, 2006; Gold, 1978).

The Quality of Life literature that has conceptualised and validated eight domains, investigated the association between subjective and objective aspects and continues to investigate the most effective methods measuring both (Schalock et al., 2002).

Poor definitions and inconsistent measurements of social inclusionEmpirical research has not used theoretical frameworks to inform the way data is collected or social inclusion is measured or reported for this group. Measures are poorly conceptualised and are not consistent across different studies. As a consequence, there are few strong indictors about the social inclusion of people with behaviours of concern and no body of data that would enable comparison with other population groups.

Most studies are small, use single or small case study designs, and report descriptive data about social inclusion without a clear organising framework. The elements described are not consistent between studies and have included: employment, both paid and voluntary; living situation; friendships and acquaintances; use of community facilities and commercial premises; meaningful activities located in community settings; social interaction with community members; and the number of times the person goes out of their front door into ‘the community’. Detailed descriptive data from this type of study provides insights into the subtle, often immeasurable changes that occur in people’s social inclusion over time and exemplifies the value of case studies and qualitative research. As Felce and Toogood (1988) remark, ‘research has tended, in the name of objectivity, to avoid detailed personal accounts… much of the quality of the change in the lives of the adults who have lived at 10 Summerton Road would go unrecorded if we had restricted ourselves just to reporting the information gathered by the objective research measures employed’ (p. 9). Qualitative studies also have a considerable unrealised potential for development of new concepts to be used in the development of more formal measurement tools.

Studies which use formal measures have focused on two key elements: the nature of personal networks such as size, relationships and frequency of contact (often referred to as community participation); and the frequency a person leaves their home and places visited (often referred to as community presence). The most commonly used measure of community presence is the Index of Community Involvement (ICI) (Raynes et al., 1994), which, based on staff reporting, collects data about: the frequency and range of a person’s activities in the community in the previous month. Though producing quantifiable and comparable data, this tool does not provide data about the precursor to the activity (was it chosen or a routine event); the quality of social interactions (was it hostile or convivial); the nature of activities (were they participatory, engaging or passive); or with whom outings or activities were shared (was it as part of a large group or as an individual). Nor does it provide any indication of the temporal and evolutionary nature of community presence for people with behaviours of concern who may, for instance, have spent long periods in institutional care. This means qualitatively quite different experiences of community presence are scored similarly.

Tracy and Whittaker’s (1990) Social Network Assessment tool has been used to collect data about important people in an individual’s life with whom they have active contact over a specified period


of time. However, different approaches to analysis and reporting of the data collected has made comparability of findings difficult. For example, studies differ in respect of who is included as a network member. Some exclude while others include paid staff, and different methods of data collection are used, with some studies relying on self-report and others using staff or family as informants (see, for example, Bigby, 2008; Forrester Jones et al., 2006; Robertson et al., 2001).

The types of valid and reliable measures that have been developed in respect of engagement and staff support of people with intellectual disability (see, for example, the Active Support Measure), are largely absent from research about social inclusion. Saxby et al.’s (1986) study is a rare example of the use of momentary time sampling and a standardised measure to examine aspects of social interaction of people with behaviours of concern in the community. This study gave rise not only to quantitative data about the frequency of activity outside of the home but also the nature of interactions when people with behaviours of concern were present in the community and used shops, cafés and other businesses.

It is remarkable that almost all of the research specifically about inclusion and people with behaviours of concern is focused on only one (engage/social participation) of the four domains identified as headline indicators of social inclusion in recent policy work undertaken by the Social Inclusion Board (Commonwealth Australia, 2010). Absent in the literature was any systematic research that considered the circumstances of people with behaviours of concern in respect of the other three domains (learn, work and have a voice) that make up the current conceptualisation of inclusion used in government policy.

While data available from the Australian Institute of Health and Welfare (2008) provides statistics about workforce participation and unemployment rates for people with disabilities, it does not report data for subgroups such as people with behaviours of concern. Notably too, population data such as the General Household Survey (2006), which includes statistics about the domain of engagement and social participation for the general population does not report data for people with a disability in general or smaller subgroups. This failure to identify people with a disability and the various subgroups in research about the broader population compounds the lack of comparable data between people with disabilities and the general population.

Failure to theorise social inclusion strategies for people with behaviours of concernTheoretically driven research and conceptualisation of social inclusion for people with behaviours of concern and those with intellectual disability more generally, is poorly developed, and work in this area lags behind that in other key aspects of people’s lives. An important issue therefore is the lack of clarity about expected outcomes in respect of social inclusion, in both policy and research. Neither mainstream social inclusion policies nor specific disability policy have articulated sub-goals or indicators for specific groups and it is hard to glean from policy or program documents a sense of what inclusion means for someone with a more severe intellectual disability and behaviours of concern.

‘Quality of Life’ is often taken as a proxy for social inclusion, which is indeed what Murphy (2009) did in her keynote address ‘Challenging behaviour: A barrier to inclusion?’ This means that the potential for the people with behaviours of concern to be socially included has been seriously underestimated and neglected by policy and implementation strategies.

While the development of Active Support has played a significant role in articulating a particular set of outcomes and indicators around engagement in meaningful activities, the focus of this work has been on activity inside the home. Little attention has been given to coherently codifying the


outcomes of successful social inclusion, nor to refining measures of social inclusion or techniques of data collection.

The personalisation of support through, for example, the use of mechanisms such as person-centred planning and individualised funding, has generated debate about the multiple possible manifestations of social inclusion for people with behaviours of concern (Clegg, 2008; Hall, 2005). This suggests the need to develop an understanding and indicators of social inclusion at the level of each individual as well as for the broader populations of people with behaviours of concern and people with intellectual disability. Yet to do this, key questions about the meaning and nature of inclusion for individuals and this group must be empirically explored. The dangers of not clearly understanding the nature of social inclusion or articulating expected outcomes are that it is left to frontline staff to reach their own understandings, who tend to emphasise community presence rather than community participation (Bigby et al., 2009).

It has been argued that the practices and service system characteristics likely to support social inclusion for people with behaviours of concern are similar to those that support other imperatives such as engagement in meaningful activities and Active Support. But there is no strong empirical evidence base, equal to that which underpins Active Support, for example, to inform the practice and organisational strategies necessary to support social inclusion as distinct from engagement in meaningful activities. Different approaches or skill sets may be required to facilitate aspects of social inclusion such as supporting social interaction and relationships with community members or organisations, or maintaining relationships with family members. Such skills will complement the well-developed strategies such as Active Support that focus on engagement and staff support. There is a need to more clearly define and evaluate strategies or skills that underpin building social inclusion. The value of adopting approaches that use action research in conjunction with demonstration programs to do this were demonstrated in a project undertaken in the UK by the Foundation for People with Learning Disabilities that worked individually to develop social inclusion with a group of people with more severe intellectual disability (Swift & Mattingly, 2009; Wightman, 2009).


Summarising implications and potential directionsImplications of the absence of research that has explored the multiple manifestations of social inclusion for people with behaviours of concern or strategies for effective interventions that support inclusion are far reaching. It means there is a dearth of strong evidence on which to base decisions about specific psycho-social, behavioural and clinical interventions or the organisation of programs to support social inclusion (Gustafsson et al., 2009; Hassiotis & Hall, 2008; Prangnell, 2009; Balogh et al., 2008). The likelihood that the type of evidence-based practice possible in medicine will ever be replicated in human services has, however, been questioned by a wider group of commentators (Gray, Platt & Webb, 2009; Reinders, 2010; Pawson, 2006). As Carr and Horner (2007, p. 5) suggest the field may never find the ‘set of algorithms that allows us to proceed systematically from the person centered planning process to the process of successfully resolving problem behavior and skill deficits in the real world contexts that best promote quality of life’. This means the field of disability must rely on more diverse types of evidence, and acknowledge the value of case reports, the evaluation and systemic sharing of day-to-day practice.

This review suggests the practices necessary to support social inclusion of people with behaviours of concern are under developed and under theorised. There is a need to tease out issues and explore dimensions of successful inclusion practices. For example, activity in the community is not an end in itself and is meaningless unless valued by the person themselves. Individual planning processes should precede any activity or intervention that seeks to further social inclusion in order to ascertain an individual’s preferences and shape judgements about their personal inclusion goals. For people with more severe levels of impairment, such individual planning processes are lengthy and resource intensive. They should involve multiple informants and are reliant on the depth of relationships with others who know the person well (Bigby & Frawley, 2009). Yet a recent study of Welcome Support Services, a service with a strong reputation for delivering quality services to people with behaviours of concern in Victoria, found that although individual assessment and planning were prominent in the program theory they were among the elements most weakly implemented by the organisation (Clement & Bigby, 2010). This suggests the need for greater attention to planning processes to develop personally valued social inclusion goals and tailored support to realise them. In turn, setting such goals not only provides a guide practice but enables greater accountability through monitoring and evaluation of outcomes (see, for example, McConkey & Collins, 2010). A key issue then becomes improving the processes of individualised planning to ensure a focus on inclusion is embedded in every plan constructed for people with behaviours of concern. Strategies must also be developed that will ensure dimensions of social inclusion figure both in the goals set and the proposed means of achieving goals.

The under theorisation and lack of evidence about good practices that support inclusion for people with behaviours of concern suggests too a need to develop and importantly evaluate programs and practices that have inclusion as a specific focus, using methods such as action research. Internationally it has been through well-researched and evaluated demonstration programs that possibilities, processes and practices to support aspects of the lives of people with behaviours of concern have developed.

The lack of clear definitions or theoretical frameworks, and the relatively superficial or ad hoc methods of measuring the social inclusion of people with behaviours of concern is reflected in the more comprehensive body of knowledge about social inclusion and people with intellectual


disability. This review suggests the dominant current research approach to inclusion is heavily weighted towards very simple measures of community presence rather than examining the more complex aspects such as active engagement or participation of people with behaviours of concern in community organisations or relationships with community members. There is a complete absence of research that considers inclusion beyond the level of the individual, and which, for example, considers the inclusive nature of localities or locally based clubs and organisations. If audits of physical access are feasible so too might be audits of the socially inclusive nature of localities. This review has suggested the value of case studies and longitudinal qualitative research to both understand further and demonstrate the infinitely varied possibilities of social inclusion for people with intellectual disability and behaviours of concern. Future research must move beyond an approach that tends to equate social inclusion with simple counts of how many times a person goes out their front door to visit the community. In pursuing a more finely grained and qualitative understanding of social inclusion researchers, funders and policymakers must adopt clear theoretical or organising frameworks to guide analysis of qualitative data.

The absence of well-conceptualised measures is one reason why there are no large-scale studies or representative data available to indicate the nature of the social inclusion of people with behaviours of concern or people with intellectual disability more generally, which would allows for comparison with the population in general or other particular subgroups. This is a major drawback that must be addressed, if attention is to be drawn to the disadvantaged position of people with behaviours of concern. The generation of comparable data will remove their relative invisibility in mainstream policy debate and strengthen the case to regard this subgroup as a special population that warrants additional attention and resources as part of the broader social inclusion agenda. To do this will require the development of social inclusion indicators relevant to people with behaviours of concern, and large-scale surveys of their life circumstance, such has occurred in the UK through the national survey of people with intellectual disability (see Emerson et al., 2005).

Consensus about the broad parameters and indicators of social inclusion is also needed to give direction to programs and services about expected outcomes and provide a framework that can be used to guide plans for individualised manifestations of inclusion for each person with behaviours of concern. Such work can create a foundation to strengthen practice together with the requirement that all plans include focus on elements of social inclusion. The Social Inclusion Board has already undertaken significant work on indicators of social inclusion (Commonwealth of Australia, 2010). An important challenge for the disability sector is to develop these further and explicate them more specifically in relation to people with behaviours of concern. An alignment between the conceptual framework and indicators of social inclusion adopted in disability policy and those used in broader social policy initiatives is important. This will not only enable comparison between subgroups of the population but also draw attention to the virtual exclusion of people with severe intellectual disability and behaviours of concern from many of the indicators of social inclusion being used for the general population (Commonwealth of Australia, 2010, 2009c). Indicators of social inclusion/exclusion, such as levels of literacy, access to the internet/technology, voting in elections, living in jobless households and long-term unemployment, are largely inapplicable and fairly meaningless for people with behaviours of concern and or more severe intellectual disability. ‘Improving outcomes for people living with disability or mental illness and their carers’ is one of the priorities identified in the federal government’s A strong, fairer Australia (Commonwealth of Australia, 2009a, p. 4). If people with behaviours of concern are to benefit from this prioritisation and be included in the broader social inclusion agenda it is critical their particular issues are acknowledged and debated outside the world of disability services, and indicators relevant to their circumstances developed and included in disability and mainstream policy documents.


Recommendations for action Develop a greater understanding, better conceptualisations and more explicit descriptions of the

key elements of social inclusion for people with behaviours of concern. Such work should be grounded in individual examples of social inclusion from which a framework of key elements that characterise social inclusion for this group can be developed.

– Undertake empirical research about the types of social interactions and relationships experienced by people with behaviours of concern, using robust conceptual frameworks. For example, Fincher and Iveson (2008) use ‘encounters’ as an innovative conceptual approach to describe and plan for interactions between strangers in cities. It moves beyond the dichotomised dimensions of community presence or participation commonly used in disability research. The notion of encounter has the potential to provide a more nuanced approach to consider social interactions experienced by people with behaviours of concern.

– Undertake research that explores differing perspectives about social inclusion of people with behaviours of concern, for example, from people themselves, from family members, from disability staff and from general community members.

– Establish a series of demonstrations projects, with the specific aim of increasing the social inclusion of people with behaviours of concern and use an action research approach to document and evaluate the strategies and outcomes that result. Projects could take different parts of the social system as their primary focus. For example, one might focus on working with individuals, another with local communities, and another with disability-specific organisations that already support people with behaviours of concern (see, for example, Swift & Mattingly, 2009; Wightman, 2009).

Develop indicators of social inclusion for people with behaviours of concern.

Work with the Social Inclusion Board to apply current indicators of inclusion to people with behaviours of concern and develop additional more applicable indicators.

Demonstrate to both general community members and staff in the disability services the potential for people with behaviours of concern to be socially included.

– Research, compile and disseminate a case book with accompanying DVD of exemplars of social inclusion of people with behaviours of concern, highlighting the diversity of forms, common elements and strategies used to achieve inclusion.

Research and evaluate the strategies and skills necessary to support social inclusion for people with behaviours of concern.

Develop targeted practice guides for staff in disability services and community organisations about strategies to support social inclusion of people with behaviours of concern.

Ensure a focus on inclusion is embedded in every plan constructed for people with behaviours of concern, including behavioural support plans. Develop strategies that will ensure dimensions of social inclusion figure both in the goals set and the proposed means of achieving goals. Monitor and evaluate outcomes of this aspect of plans.

Pilot a locality-based project to examine the inclusive nature of a locality and locally based clubs and organisations and explore ways to better equip individual community members, community


organisations and societies to interact with, be more tolerant and inclusive of people with behaviours of concern, and develop a local action plan for the social inclusion of this group.

Provide additional and targeted resources to shared supported accommodation programs to develop and implement individual social inclusion goals and strategies for their residents with behaviours of concern.

Document the extreme social exclusion experienced by people with behaviours of concern vis-a-vis the general population and other population subgroups.

– Survey all people subject to restrictive practices in Victoria, using similar tools and measures that are being used as indicators of social inclusion in the general population.

– Undertake a large survey of all people with intellectual disabilities to document their current life circumstances.

Encourage organisations that compile large datasets about aspects of social inclusion (such as AIHW, ABS, HILDA) to include people with disabilities as a category and to include subgroups, such as people with intellectual disability within this overarching category.

Take action to increase the number of people with behaviours of concern who are employed on a paid or voluntary basis.

– Develop an affirmative action program within existing employment programs such as establishing specific targets for people with behaviours of concern, or establish specialist services to support this group to participate in meaningful employment or other forms of activities in the community.


ReferencesAllen, D. (2005). Positive behavioural support: Definition, current status and future directions. Tizard Learning Disability Review, 10(2), 4–11.

Australian Bureau of Statistics (2006). General Household Survey: Canberra. ABS

Australian Institute of Health and Welfare (2008). Disability in Australia, Intellectual Disability Canberra: Australian Institute of Health and Welfare.

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: Reviews 2008 (4).

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(2), 148–157.

Bigby, C., Clement, T., Mansell, J. & Beadle-Brown, J. (2009). ‘It’s pretty hard with our ones, they can’t talk, the more able bodied can participate’: Staff attitudes about the applicability of disability policies to people with severe and profound intellectual disabilities. Journal of Intellectual Disability Research, 53(4), 363–376.

Bigby, C. & Frawley (2009). Social work and intellectual disability: Working for change. London: Palgrave MacMillan

Bigby, C. (2010). Social inclusion and people with challenging behaviour: A review of the empirical literature. Report prepared for the Office of the Senior Practitioner.

Brown, L., Shirga, 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).

Campbell, M. (2007). Staff training and challenging behaviour: Who needs it? Journal of Intellectual Disabilities, 11(2), 143–156.

Carr, E. & Horner, R. (2007). The expanding vision of positive behavior support: Research perspectives on happiness, helpfulness, hopefulness. Journal of Positive Behavior Interventions, 9, 3–14.

Carr, E., Horner, R., Turnbull, A., Marquis, A., Magito-McLaughlin, D., McAtee, M. et al. (1999a). Positive behaviour support for people with developmental disabilities: A research synthesis. Washington DC: American Association on Mental Retardation.

Carr, E., Levin, L., McConnachie, G., Carlson, J., Kemp, D., Smith, C. et al. (1999b). Comprehensive multi-situational intervention for problem behaviour in the community: Long-term maintenance and social validation. Journal of Positive Behaviour Interventions 1, 5–25.

Carr, E. G., Dunlap, G., Horner, R. H., Koegel, R. L., Turnbull, A. P., Sailor, W. et al. (2002). Positive behaviour support: Evolution of an applied science. Journal of Positive Behavior Interventions, 4(1), 4–16.

Clegg, J. (2008). Holding services to account. Journal of Intellectual Disability Research, 52(7), 581–587.

Clement, T. & Bigby, C. (2009a). 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(3), 264–275.

Clement, T. & Bigby, C. (2009b). Group Homes for People with Intellectual Disabilities: Encouraging Inclusion and Participation. London: Jessica Kingsley Publishers.

Clement, T. & Bigby, C. (2010). An evaluation of a reputed exemplary residential support service for people with severe intellectual disability and challenging behaviour. Melbourne: La Trobe University.

Commonwealth of Australia (2009a). A stronger, fairer Australia. Canberra: Department of Premier and Cabinet.

Commonwealth of Australia (2009b). The Australian public service policy design and delivery toolkit. Canberra: Social Inclusion Unit, Department of Prime Minister and Cabinet.


Commonwealth of Australia (2010). A social inclusion in Australia: How is Australia faring. Canberra: Australian Social Inclusion Board, Department of Prime Minister and Cabinet.

Commonwealth of Australia (2009c). A compendium of social inclusion indicators Australian Social Inclusion Board Canberra: Commonwealth of Australia.

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.

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.

Emerson, E. (2001). Challenging behaviour. Analysis and intervention in people with severe intellectual disabilities. (2nd ed.). Cambridge: Cambridge University Press.

Emerson, E., Barrett, S., Bell, C., Cummings, R., Hughes, H., McCool, C. et al. (1987). The Special Development Team: Developing Services for People with Severe Learning Difficulties and Challenging Behaviours: University of Kent at Canterbury.

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.

Emerson, E., Malam, S., Davies, I. & Spencer, K. (2005). Adults with learning disabilities in England, 2003/04. London: Health and Social Care Information Centre Emerson, E. & Hatton, C. (1996). Deinstitutionalization in the UK and Ireland: Outcomes for service users. Journal of Intellectual and Developmental Disability, 21(1), 17–37.

Emerson, E., Robertson, J., Gregory, N., Hatton, C., Kessissoglou, S., Hallam, A. et al. (2000). Quality and costs of community-based residential supports, village communities, and residential campuses in the UK. American Journal on Mental Retardation, 105(2), 81–102.

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: BIMH Publications.

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(4), 307–326.

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. Journal of Intellectual & Developmental Disability, 25(4), 307–326.

Felce, D., Perry, J., Romeo, R., Robertson, J., Meek, A., Emerson, E. et al. (2008). Outcomes and costs of community living: Semi-independent living and fully staffed group homes. American Journal on Mental Retardation, 113(2), 87–101.

Forrester-Jones, R., Carpenter, J., Coolen-Schrijner, P., Cambridge, P., Tate, A., Beecham, J. et al. (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(4), 285–295.

Gold, M. (1978). Try Another Way. Training Manual. Texas: Marc Gold & Associates.

Gray, M., Platt, D. & Webb, S. (2009). Evidence based practice: A critical stance London: Routledge.

Gustafsson, C., Ojehagen, A., Hansson, L., Sandlund, M., Nystrom, M., Glad, J. et al. (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(3), 281–290.

Hall, E. (2005). The entangled geographies of social exclusion/inclusion for people with learning disabilities. Health & Place, 11, 107–115.

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: Reviews 2008(3).


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(3), 193–222.

Lakin, K., Hill, B., Hauber, F., Bruininks, R. & Heal, L. (1983). New admissions and readmissions to a national sample of public residential facilities. American Journal of Mental Deficiency, 88, 13–20.

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.

LaVigna, G. W. & Thomas, J. W. (2005). A Positive Behavioural Support Model for Breaking the Barriers to Social and Community Inclusion. Tizard Learning Disability Review, 10(2), 16–23.

Lowe, K., Felce, D. & Blackman, D. (1996). Challenging behaviour: The effectiveness of specialist support teams. Journal of Intellectual Disability Research, 40(4), 336–347.

Magito-McLaughlin, D., Mullen-James, K., Anderson-Ryan, K. & Carr, E. (2002). Best practices: Finding a new direction for Christos. Journal of Positive Behaviour Interventions, 4, 157–165.

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(3), 170–182.

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.

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(2), 135–143.

Murphy, G. (2009). Challenging behaviour: A barrier to inclusion? Journal of Policy and Practice in Intellectual Disabilities, 6(2), 89–90.

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: Philosophy, service, and service users. Mental Handicap Research, 4(1), 41–66.

Myrbakk, E. & Von Tetzcnner, S. (2008). The prevalence of behaviour problems among people with intellectual disability living in community settings. Journal of Mental Health Research in Intellectual Disabilities, 1(3), 205–222.

Pawson, R. (2006). Evidence-based policy: A realist perspective. London: Sage Publications Ltd.

Prangnell, S. (2009). Behaviour interventions for self injurious behaviour: a review of recent evidence (1998–2008). British Journal of Learning Disabilities, doi:10.111/m.1468-31562.2009.00598x.Raynes, N. V., Wright, K., Shiell, A. & Pettipher, C. (1994). The cost and quality of community residential care. London: Fulton.

Reinders, J. (2010). The importance of tacit knowledge in practices of care. Journal of Intellectual Disability Research 54, 1, 28–37.

Robertson, J., Emerson, E., Gregory, N., Kessissoglou, S., Hallam, A. & Linehan, C. (2001). Social Networks of People with Mental Retardation in Residential Settings Mental Retardation, 39(3), 201–214.

Robertson, J., Emerson, E., Pinkney, L., Caesar, E., Felce, D., Meek, A. et al. (2004). Quality and costs of community based residential supports for people with mental retardation and challenging behaviour. American Journal on Mental Retardation, 109(4), 332–344.

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, 82092.

Schalock, R., Brown, I., Brown, R., Cummins, R. A., Felce, D., Matikka, L. et al. (2002). Conceptualization, measurement, and application of quality of life for persons with intellectual disabilities: Report of an international panel of experts. Mental Retardation, 40(6), 457–470.

Schalock, R., Harper, R. & Benung, T. (1981). Community integration of mentally retarded adults: community placement and program success. American Journal of Mental Deficiency, 85, 478–488.


Swift, P. & Mattingly, M (2009). A Life in the Community An action research project promoting citizenship for people with high support needs. London: Foundation for People with Learning Disabilities.

Todd, S., Evans, G. & Beyer, S. (1990). More recognised than known: The social visibility and attachment of people with developmental disabilities. Australia and New Zealand Journal of Developmental Disabilities, 16(3), 207–218.

Tracey, E. & Whittaker, J. (1990). The social network map: Assessing social support in clinical practice. Families in Society 71, 461–470.

Tyrer, P., Oliver-Africano, P. C., Ahmed, Z., Bouras, N., Cooray, S., Deb, S. et al. (2008). Risperidone, haloperidol, and placebo in the treatment of aggressive challenging behaviour in patients with intellectual disability: A randomised controlled trial. The Lancet, 371(9606), 57–63.

United Nations (2006). Convention on the Rights of Persons with a Disability. Retrieved August 20, 2007, from www.un.org/disabilities <http://www.un.org/disabilities>

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(4), 303–318.

Walker, P. (1999). From community presence to sense of place: community experiences of adults with developmental disabilities. Journal of the Association of Persons with Severve Handicaps, 24, 23–32.

Wightman, C. (2009). Connecting people: steps to making it happen, London: Foundation for People with Learning Disabilities.

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(6), 419–431.

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 and Developmental Disabilities, 23(2), 155–170.


Appendix 1: Defining features of positive behaviour support

Defining features of positive behaviour support

1 Comprehensive lifestyle change and improved quality of life are goals of any intervention and can only be defined based on the values of those receiving support.

2 Interventions and supports are to be seen and implemented from a long-term, life span perspective.

3 Interventions must possess ecological validity, in that strategies of intervention and support must be feasible in, relevant to, and effective in real-life settings and situations.

4 Principal stakeholders (such as parents, teachers, friends, employers and siblings) function as collaborators and partners in the development and implementation of interventions and support plans.

5 Social validity is a primary and pervasive criterion of effective procedures and intended outcomes.

6 Interventions are developed with an understanding that ensuring fidelity with respect to support and sustainability requires attention to systems variables.

7 Support plans are developed with a comprehensive emphasis on prevention, and an acknowledgment that active and functional intervention occurs when problem behaviours are not present.

8 Support plans are: (a) based on assessment of medical, behavioural and educational variables; (b) guided by principles drawn from behavioural and biomedical science; and (c) evaluated through overt measurement of impact.

9 An appreciation that optimal effectiveness requires the utilisation of knowledge derived from a variety of methodological practices.

10 A pragmatic understanding that contributions to the development of effective interventions and supports can come from multiple theoretical perspectives.

Adapted from Magito-McLaughlin et al. (2002)


Characteristics of exemplary services for people with behaviours of concern

Characteristics Individualisation Good management First-line and middle managers of direct care staff have a good understanding of

the reasons for an individual’s challenging behaviour and of how this interacts with the everyday organisation of the service

What service systems should provide

Specialist services locally, which can support good mainstream practice as well as directly serve a small number of people with the most challenging needs

Should invest in relationships and networking to expand the capacity of local services to understand and respond to challenging behaviour; ensure the availability of education, work and day opportunities, and access to other health and social services

Local service inclusions

A range of small-scale housing, work, education and other day placements into which markedly different levels of staff support could be provided on the basis of individual need at a particular time

A sufficiently skilled workforce to reduce the probability of challenging behaviour emerging or worsening throughout the service

A pool of sufficient skill to help services work through difficult periods Skilled professional advice from a full range of specialists, working in a coordinated

and genuinely multidisciplinary way Backed-up by good access to generic services (including mental health services) Management commitment to and focus on service quality and the staff training and

support to achieve

Adapted from Mansell (Department of Health, 2007, pp. 17–19).


Appendix 2: Summary of research reporting community participation outcomes for people with challenging behaviour

Study Description Sample Follow up Community participation measures Key findings and conclusions

1. Bird & Luiselli (2000)

Intervention outcomes study: Move from large, specialist congregate care to a specialist service that coordinates support across life domains; detailed description of intervention, functional assessment prior to move, multifaceted behaviour support plan (BSP) encompassing antecedent control, positive reinforcement, functional communication training, expression of preferences, lifestyle change, emergency restraint, exclusionary time out, dedicated clinical supervisor to support planning and implementation, ongoing refinement of plans.

5 men aged 24–34 years: 3 mild intellectual disability (ID), 2 moderate ID. Multiple diagnosis and long-term severe challenging behaviour (CB). History of secure congregate settings.

24 months Descriptive – type of employment/day activity setting, type of accommodation.Other measures included frequency of CB.

Change to more individualised, less restrictive living situations in the community, alone or with 1 or 2 co-residents, 1 man only in secure setting, 4 men in supported work settings, 1 man doing independent work. Reduced frequency of CB, reduced use of time out, improved QoL – greater independence, increased diversity of living and work environment, reduced supervision.Need for continuous intervention planning, specialist intensive support to frontline staff and broadening of sources of support.



2. Carr et al. (1999)

Intervention outcomes study: Effectiveness and long-term maintenance of interventions that are practical, applied in natural settings and aim to reduce CB while improving Quality of Life (QoL). Detailed description of 5 components of assessment-based strategy, including rapport building, functional communication training, tolerance of delay, choice and embedding, 36 hours initial assessment per person. Based on positive behaviour support (PBS) principles published in Carr et al. (1994).

2 men, 1 woman aged 14, 17 and 39 years. All with ID and some symbolic communication, history of severe CB. 2 living at home with parents, 1 in group home with 3 co- residents.

6 years Descriptive – significant changes in life situation including work and social relationships.Other measures included judgements re: efficacy of intervention from 100 group home staff using short video segments from baseline and post-intervention.Direct observation and detailed recording of engagement, communicative acts and CB.

Increased use of community-based settings that were central to the intervention. Detailed illustration of significant changes in work, social relationships and choice. Long-term positive lifestyle changes.Reduced frequency of CB across multiple community settings and living situations.Need to measure outcomes other than CB, importance of ongoing assessment and plan review to maintain lifestyle and take account of changes that occur over the life.

3. Jensen et al., (2001)

Intervention outcomes study: Multi-component intervention before and after move to small group homes. Detailed description of 5-phase intensive intervention led by specialist staff, including ongoing functional behaviour assessment, monthly reviews, person-centred plan (PCP), peer review, initially daily 4-hour community outings, functional communication training

1 managed 35 years with ID, autism, history of seizures, severe CB, hospitalisation and large-scale congregate living

6 years Descriptive – community activities;detailed recording of CB and medication levels.

Greater access to community settings, approx. 20 different locations a month, increased number of acquaintances in community facilities such as restaurants, museums. Increased choice.Improved QoL.Significantly lower frequency and severity of CB.



4. McClean et al. (2007)

Intervention outcomes study: Implementation of positive behaviour support approach. Comprehensive behavioural assessment and intervention plan following Willis et al. (1993) and LaVigna & Willis (2005). Implementation supported by behaviour support planning meetings, mental health reviews, addition of intensive support workers, emergency respite care, crisis response. Environmental modifications such as relocation to individual apartment for one participant.

2 women and 3 men, most severe challenging behaviour, 2 moderate ID, 2 severe ID, 1 with mild ID.1 lived with parents, 1 in group home and visited parents at weekend, 3 in community-based residential settings.

24 months QoL questionarie (Schlock et al., 1989) and description of community activity.Observations and daily recording of frequency of CB frequencyPeriod Service Review.

3 participants significantly improved QoL scores, (1from 2nd to 92nd percentile), 2 participants secured supported employment, 1 commenced training course, 1 moved to own apartment.QoL subscales not reported, descriptive increase in community-based activities for 3 participants.Potential for long-term implementation and long-term community activity with continuing attention to individualised support.Observed CB reduced to near zero per month. Variable PSR score re: implementation of BSP, 95% to 48%.

5. Magito-McLaughlin et al. (2002)

Intervention outcomes study: Multi-component intervention. Detailed intensive intervention with specialist staff based on principles of PBS including functional contextual behavioural assessment, generic solutions and PCP. Specific solutions included move to individual apartment and access to community-based day support.

1 young man diagnosed with autism, seizure disorder, rapid-cycling bi-polar disorder, long history of severe CB and placement breakdown.

8 months Descriptive – detailed life situation pre- and post-intervention including time spent in the community and degree of CB.

Time in community settings increased from approx 20 minutes per month to 190–260 hours following intervention. Secured part-time work in local community in greenhouse and paid employment delivering mail. Demonstrates outcomes from application of PBS principles, proposes decision model for implementation.



7. Di Terlizzi (1994)

Longitudinal case study: To identify the combined impact of opportunities, support and significant events such as residential and educational environments on the QoL.

1 woman with severe ID, resident in an institution from age of 6 for 39 years until relocated to small group home at age 36, 4 years prior to publication.

Retrospective study

Descriptive – qualitative life history, drawing on analysis of institutional records, interviews with 25 ex and current staff members, focus on interaction with peers, activity and problem behaviours.

Vividly demonstrates the qualitative change to life situation when opportunities for social participation are available. Periods in participant’s life when she had increased opportunities for social interaction and engagement coincided with reduced levels of CB. Illustrated variability of such opportunities over time and dramatic impact of life quality when such opportunities are withdrawn.

8. Dagnan et al. (1996)

Comparative outcome study: Changes in QoL and consistency with normalisation principles following move from hospital to specialist small group home for people with ID and CB on site with 2 other similar homes. No detail re: organisation of staff practices.

4 men, aged 33–57 years, 2 moderate ID, 2 severe ID, severe CB.

15 months. Descriptive and quantitative – global QoL measure Compass: a multi-perspective evaluation of quality in home life (Cragg & Look, 1992) with subscales of activity, community access, community relationships, dignity, choice, individuality. Completed via interview staff and residents, direct observation and subjective impression of assessors. Dairy records of activity.Direct observation of engagement in meaningful activity, communicative acts and CB using momentary time sampling based on (Mansell et al., 1982).

Increased scores on all subscales.Greater frequency of trips to wider variety of community places such as prior to move only 1 man made one trip to a non-segregated facility, post move all men made at least 3 regular trips.Substantial improvement in QoL following move, in particular activity, choice, dignity. Substantial increase in engagement.Demonstrated potential to alter the impact of CB on community participation.Suggests that measures of QoL not previously used for people with CB.



9. Felce et al. (2001)

Multivariate study: Investigated relationship between resident and service characteristics, service processes and QoL outcomes and costs, in small specialist group homes (1–9 residents) and larger accommodation services (10–188 residents).

34 adults with severe ID and the most severe CB, aged 21–55 years. 17 in specialist group homes and 19 in larger congregate services.

N/A Modified Index of Community Involvement (ICI) (Raynes et al., 1994) based on previous month, i.e. frequency and range of activities (5 items relate to social activity such as been out on trips with friends and family, had overnight guests) 10 items related to community activities (shopping, café, hairdresser). Multiple other measures of resident characteristics, behaviour, setting characteristics, service processes, resident outcomes and costs. Multivariate regression analyses.

Community activities associated with higher resident ability, smaller residential settings. Level of CB was a subsidiary contributor; the more the CB the less frequent was to frequency of community.Level of CB not associated with QoL.

10. Golding et al. (2005)

Comparative outcome study: Changes in QoL following a move from a National Health Service (UK) institution to 2 specialist group homes for people with CB. Comparison between hospital group who moved at start of study and community group who had moved 15 months prior.

12 men with mild to moderate ID and CB in two groups. Hospital group, 6 men aged 35–60 years. Community group aged 22–57 years.

6 months Life experience checklist (Ager, 1990). Overall score reported and relationship subscale.Direct observation of engagement in meaningful activity, communicative acts and CB using momentary time sampling based. Part 2 ABS, RC:2 (Nihra et al., 1993) for reported CB.

Improvements in QoL for both groups, and on relationships subscale for hospital group whose total life experiences checklist (LEC) score and relationship scores increased by 53%.Observed CB decreased by 98% and maintained over time.Community group, LEC score increased by 10%, relationship scores not reported for this group.No significant change in reported CB.



11. Lowe, Felce & Blackman (1996)

Comparative outcome study: Evaluation of two specialist community services for people with ID and CB and comparison of outcomes with people using more standard community living services with similar behaviour but not referred to specialist services. Specialist services provided intensively tailored support to staff and residents using a multidisciplinary team. Lived in various settings, including institutions, group homes, hostels and private homes alone for with family.

30 people with ID and CB in experimental sample, 18 in group homes with support from specialist service A, 12 with support from specialist service B and comparison sample based on 21 people with severely CB.Sub-sample of matched groups on basis of CB, 14 from experimental (9 service A and 5 service B) and 12 comparison group.

Varied average 13 months experimental group, 12. 6 months comparison group

Index of Community Involvement (ICI) (Raynes et al., 1989)Multiple measures of personal and setting characteristics and direct observations of engagement, CB and communicative acts using momentary time sampling.Report CB ABS (Aman et al., 1995)

No difference on ICI scores for residents using specialist and non-specialist services or in overall outcomes other than Index of Participation in Community Life and contact with staff.Outcomes did differ between the two specialist services, including hours of scheduled activity, and number of severe behaviours. Authors surmised due to structure staffing and policies and importance of attention to quality of specialist services.

12. Robertson et al. (2004)

Comparative study of outcomes for residents with CB and costs of different models of resident congregation in small group homes for comparison of houses with less than 50% of other residents with CB with those with more than 50% or residents.

25 matched groups adults with ID and CB, aged 18–65 years – living in group homes with (2–6 residents) either 50% or fewer other residents with CB or over 50% with CB.

10 months Index of Community Involvement (ICI) (Raynes, Sumpton & Flynn, 1987; Raynes et al., 1994) including contact with friends and family. Multiple measures of other outcomes and characteristics, including direct observation of engagement in meaningful activity, communicative acts, CB and staff support using momentary time sampling.Part 2 ABS, RC:2 (Nihra et al., 1993) for reported CB.

No difference in community-based activities between congregate and no congregate settings.A greater proportion of residents with CB was associated with smaller social networks, less choice, few hours scheduled activity, greater likelihood of antipsychotic medication, and greater injuries from other residents for person with CB. Greater increase in observed and reported CB for residents in congregate settings. Higher costs in congregated settings.



13. Young (2006)

Comparison outcome study of QoL for residents relocated from an institution to either dispersed small group homes (2–3 residents) or cluster arrangements (2–3 residents per dwelling). Both with policy, staff training and similar management practices.

30 matched pairs of adults, with moderate and severe ID and CB, in small group homes cluster arrangements (20–25 residents on a site with an administration centre, and 7–8 small dwellings).

24 months Objective aspects of QoL based on LCQ (adapted from Ashman et al., 1991) included measure of community access (frequency of visits to shops, parks, cafes etc) and social/emotional wellbeing (contact and visit with family and friends).ABS Part 2 (Nihra et al., 1993)

Both groups significant increase in total LCQ score, on all domains. Community group greater increases in community access than cluster group.No difference between groups on social/emotional wellbeing.No significant change in CB or between groups, but change to type of behaviour. Significant decrease for community group on domains of trustworthiness and sexual behaviour. Cluster group no change in domains.

14. Saxby Thomas, Felce, De Kock (1986)

Description of the nature of activity and social interaction when people with profound and severe ID visit local amenities such as shops and cafes with staff and other residents.

7 women and 3 men with severe or profound ID, 9 of whom had CB or significant autistic social impairments (24–58 years), living in small group homes.

N/A Detailed observation of participants on 6 occasions when shopping and 3 occasions when visiting cafe or pub using momentary time sampling coded for type of interaction and behaviour.Survey of 38 business people whose premises participants frequented re: attitude to participants.

All participants engaged in activities appropriate to the community setting, and most had some contact with members of public. Relatively low levels of substantive engagement in meaningful activity while in community settings, 36% shopping, 23% cafes. Low interaction levels with public between 0.7% and 2.3%, those with more severe ID least interaction. Use of facilities accepted and CB tolerated by proprietors.


Appendices referencesAgar, A. (1990). The life experiences checklist. Windsor: NFER-Nelson.

Aman, M. G., Burrow, W. H. & Wolford, P. L. (1995). The Aberant Behavior Checklist – Community: Factor validity and effect of subject variables for adults in group homes. American Journal on Mental Retardation, 100(3), 283–292.

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.

Bird, F. L. & Luiselli, J. K. (2000). Positive behavioural 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(1), 5–19.

Carr, D., Levin, L., McConnachie, G., Carlson, J., Kemp, D. & Smith, C. (1994). Communication-based intervention for problem behaviour. A users guide for producing positive change. Baltimore Brookes.

Carr, E., Levin, L., McConnachie, G., Carlson, J., Kemp, D., Smith, C., et al. (1999). Comprehensive multi-situational intervention for problem behaviour in the community: Long-term maintenance and social validation. Journal of Positive Behaviour Interventions 1, 5–25.

Cragg, R & Look, R. (1992). Compass: A multi-perspective evaluation of quality in home life. Birmingham UK: Cragg Publishing.

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(2), 125–135.

Di Terlizzi, M. (1994). Life History: The Impact of a Changing Service Provision on an Individual with Learning Disabilities. Disability and Society, 9(4), 501–517.

Felce, D., Lowe, K., Beecham, J., & Hallam, A. (2001). 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: Erratum. Journal of Intellectual and Developmental Disability, 26(1), 109.

Golding, L., Emerson, E. & Thornton, A. (2005). An evaluation of specialised community-based residential supports for people with challenging behaviour. Journal of Intellectual Disabilities 9, 145–154.

Jensen, C., McConnachie, G. & Pierson, T. (2001). Long-term multi-component intervention to reduce severe problem behaviour: A 63-month evaluation. Journal of Positive Behaviour Interventions, 3, 225–250.

LaVigna, G. W. & Willis, T. J. (2005). Episodic severity: An overlooked dependent variable in the application of behavior analysis to challenging behavior. Journal of Positive Behavior Interventions, 7(1), 47–54.

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.

Mansell, J., McGill, P. & Emerson, E. (2001). Development and evaluation of innovative residential services for people with severe intellectual disability and serious challenging behaviour. In: L. M. Glidden (Ed.), International Review of Research in Mental Retardation (Vol. 24, pp. 245–298). New York: Academic Press.

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(3), 281–301.

Nihira, K., Leland, H. & Lambert, N. (1993). Adaptive Behavior Scale – Residential and Community. Austin, TX.: Pro-Ed.

Raynes, N. V., Sumpton, R. C. & Flynn, M. C. (1987). Homes for mentally handicapped people. London: Tavistock.

Raynes, N., Sumpton, R. & Pettipher, C. (1989). The index of community involvement. Manchester: Department of Social Policy and Social Work, The University of Manchester

Willis, T. J., Laviga, G. & Donnellan, A. M. (1993). Behaviour assessment report and intervention plans: Evaluation instrument. Los Angeles, CA: Institute for Applied Behaviour Analysis.


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