‘Environments of concern’: reframing challenging behaviour within a human rights approach

Abstract

While disability is recognised by the United Nations Convention on the Rights of Persons with Disabilities (CRPD) as an evolving concept, the language of positive behaviour support has not kept pace with the current human rights-based approach. The widely-used terms ‘challenging behaviour’ and ‘behaviours that challenge’ imply that the behaviour is inherent in a person with disability. Words have power in shaping practice: when the behaviour of the person with disability is framed as the problem, this leads to a pathologisation or labelling that can provide a rationale to medicate and restrain as a way of ‘managing the challenging behaviour’. Many behaviours seen as being challenging could be better understood as ‘adaptive behaviours to maladaptive environments’, or legitimate responses to difficult environments and situations. In this paper, we argue that the language and implementation of positive behaviour support should better take into account the CRPD and contemporary evidence on behaviour change interventions, which support a shift away from focusing on individuals’ behaviours towards putting environments front and centre. We outline how the social-ecological model could be used as a framework to more explicitly address ‘environments of concern’ in developing tailored and system-wide responses to behaviour support needs. We argue there is an urgency for this paradigm shift to better reflect the views of people with disability and improve outcomes.

Disability rights movements have undoubtedly transformed the way people with disability¹ are viewed and treated in society. The shift from a medical model of disability, which focuses on biological impairment as the cause for disability, towards alternative models that emphasise human rights and social barriers to inclusion has been slow but steady. The ratification of the UN Convention on the Rights of Persons with Disabilities (CRPD) by many countries in the late 2000s represents a major achievement in the fight for people with disability to be able to exercise their rights as full and equal members of society. However, the language of positive behaviour support (PBS) has not kept pace with the current rights-based approach.

This paper outlines a history, critiques and consequences of the language around ‘challenging behaviour’, a widely used term in the field of PBS. We advocate for a reorientation away from focusing on the person as the source of the difficulty, towards an approach to PBS that puts ‘environments’ front and centre – a focus that is lost in the biopsychosocial model widely recognised as underpinning PBS (Gore et al. 2022).

History of ‘challenging behaviour’

Historically, personal expressions of people with intellectual and other cognitive disability such as aggression, self-harm, and repetitive behaviours were labelled as ‘abnormal’, ‘dysfunctional’, ‘aberrant’, ‘problem’ or ‘maladaptive’ (NICE 2015). However, in the absence of acute medical causes, these behaviours are often valid responses to being unable to communicate unmet needs (NICE 2015) or being in difficult environments and situations (Ramcharan et al. 2009). Like any person who is unable to exercise choice and control, a person with disability might react negatively to an oppressive home environment by yelling or leaving home. As one person with intellectual disability living in a residential facility put it:

I wanted a glass of milk and they said ‘no’ so I kicked off. They said there wasn’t enough, but there was. (Jones and Kroese 2007)

Emerson and Bromley’s term ‘challenging behaviour’ was coined in 1995 and, along with the close derivative ‘behaviour that challenges’, is still widely used today. Unlike earlier terms that implied the ‘problem’ was entirely located within the person, ‘challenging behaviour’ was originally intended to remind those working with people with disability that such behaviour was a challenge to service provision. Under Emerson and Bromley’s 1995 definition, ‘challenging behaviour’ is seen as:

Culturally abnormal behaviour 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 behaviour which is likely to seriously limit use of, or result in the person being denied access to, ordinary community facilities. (Emerson and Bromley 1995)

Emerson and Einfeld (2011) extend that definition to characterise ‘challenging behaviour’ not just in terms of those that risk physical harm or limiting community access, but also those that impact more broadly on wellbeing and life quality. They also argue that ‘challenging behaviour’ must be seen as a social construction – that is, that social processes are involved in defining ‘acceptable’ behaviour and that this has consequences for the person with disability and others in their lives.

Though emphasising the socio-cultural context for behaviour, both Emerson’s 1995 and 2011 definitions of ‘challenging behaviour’ centre the experience of the service provider or society, still framing the ‘behaviour’ of the person with disability as the problem that is ‘challenging’ others. In these definitions, the behaviour is defined by society, but not explicitly caused by it – the focus is not on identifying problems with the environment that a person is in. Further, it takes a view that such behaviour is ‘abnormal’, even though the behaviour may be a ‘normal human response’ to a challenging situation (Swaffer 2018), or very functional in being a way to quickly and easily communicate distress.

Ramcharan et al. (2009) suggest that many ‘challenging behaviours’ may be better framed as ‘adaptive behaviours to maladaptive environments’. In this context, behaviour can be seen as a form of ‘resistance’ or ‘legitimate protest’. However, like another proposed alternative that focuses on external causes – ‘responsive behaviour’ (Markwell 2016) – this phrase likely requires significant explanation to be fully understood by most people (Cunningham et al. 2019).

Others have advocated for the phrase ‘behaviours of concern’, as a way to move away from highlighting the adversarial ‘challenge’ set to providers (Chan et al. 2012). While ‘behaviours of concern’ has been widely adopted and used within Australia, ‘challenging behaviour’ and ‘behaviour that challenges’ (Gore et al. 2022) still predominates in the field of PBS internationally. The drift toward using these terms as diagnostic labels (Emerson and Einfeld 2011) (e.g. ‘his challenging behaviours’) demonstrates that unless there is real change in how behaviour is viewed, any changes in terminology will just become another simile for an entrenched approach that sees the person as the problem.

‘We shape our tools, and thereafter they shape us’ (Culkin 1967)

Language is never ‘just semantics’; words have power. We shape our language, and those words in turn shape how we think and the things that we do. The behaviour of people with disability is pathologised through language in a way that it is not for people without disability, and this has consequences.

For people with disability, normal acts of everyday life are frequently labelled and medicalised – going to the toilet becomes ‘toileting’; going out becomes ‘accessing the community’ (and also implies that a person with disability is not part of the community). These acts of labelling and medicalisation can lead to an ‘othering’ of people with disability (Hayes and Hannold 2007), undermining their human rights and creating further vulnerability and marginalisation. Kitwood, for example, used the phrase ‘malignant social psychology’ to describe the ways in which those around a person with dementia can undermine the person’s wellbeing through depersonalising language and actions, reducing life-affirming interactions and precipitating further cognitive decline (Kitwood 1997).

Critically, the pathologisation and labelling of a person with disability as having ‘challenging behaviours’ can provide a medical rationale to medicate and restrain. Despite increasing regulation and years of research highlighting the negative impact of psychotropic medication and other restraints, their use in managing the behaviour of people with disability remains highly prevalent (Branford et al. 2019). A reframing of ‘challenging behaviour’ that moves past a biomedical lens is needed – not just for terminology’s sake, but as a mechanism to shift behaviour support practice to better identify and address ‘environments of concern’.

The evidence for ‘environments of concern’

The aim of PBS is to ensure high quality support that combines the goals of enhancing life quality and reducing ‘behaviours that challenge’, for the benefit of people with disability and other key people in their lives (Gore et al. 2022). This should include bespoke support ‘environments’ and constructional approaches that support people to learn and use important skills to mitigate the risk of ‘behaviours that challenge’ (Gore et al. 2022).

Increasing evidence suggests that focusing on ‘environments’ is the key to meeting behaviour support needs and improving quality of life for people with disability. Central to this evidence is the views of people with disability themselves, as well as evidence on the effectiveness of behaviour change interventions both for people with disability and in the wider population.

Van den Bogaard et al. (2019) undertook a systematic review of studies that asked people with intellectual disability for their views on the causes of their own or others’ ’challenging behaviours’. They identified three main types of factors across 10 studies: environmental, interpersonal, and intrapersonal factors. Environmental factors leading to ‘challenging behaviour’ related not just to the physical environment, but also to the wider community and its structure, including feeling excluded or isolated. Intrapersonal causes (i.e. factors coming from within), such as emotions, were often seen by people with disability as being triggered by interpersonal interactions or environmental factors.

In the field of PBS, interventions that focus just on the ‘environments’ around a person with disability have been shown to be effective in improving outcomes for caregivers, agencies and the person themselves. A randomised trial of caregiver training comparing Mindfulness-Based Positive Behavior Support (MBPBS) and PBS alone demonstrated that both interventions were effective in reducing ‘challenging behaviours’ as well as other outcomes, though MBPBS showed greater improvements (Singh et al. 2020). By combining PBS with mindfulness-based practices, MBPBS teaches caregivers to reduce their own stress by viewing and responding to behaviour in a mindful manner (Singh et al. 2020). Organisational contexts can also have a major influence on ‘challenging behaviour’, as well as on the use of restrictive practices. In a longitudinal evaluation of an organisational change effort to minimise restraint and seclusion, Craig and Sanders (2018) reported marked decreases in the use of restrictive practices, reduced staff injuries from restraints, and increases in client goal mastery. Organisational factors such as the culture of an organisational environment (e.g. perceived purpose, regard for residents) can also be key to resident quality of life (Olivier-Pijpers et al. 2019).

In addition, contemporary evidence on behaviour change in the wider population backs a shift away from targeting individuals’ behaviours towards a focus on environments. Historically, many behaviour change interventions in public health focused solely on increasing knowledge and awareness – for example, telling people to exercise and improve their diet in order to lose weight. However research has demonstrated that this emphasis on individual capabilities and motivation fails to lead to sustained benefits for many people (Davis et al. 2015). Being able to exercise and eat well also requires conducive environments, such as having enough time and money to buy and prepare healthy meals (or someone who can facilitate this), and availability of safe and accessible spaces for exercise.

That is, improving population health also requires ‘swimming upstream’ to address the wider social, environmental and cultural factors that determine an individual’s health (Kiran and Pinto 2016). Behaviour change interventions are thus more effective in improving population health if they simultaneously target different levels (e.g. individual, community and population) (NICE 2007). This multitiered approach is used as the basis for the field of school-wide positive behaviour interventions and supports (SWPBIS), which has been identified as an effective way to reduce school discipline and increase academic achievement (Lee and Gage 2020). SWPBIS explicitly focuses on primary prevention at the level of the wider school environment by providing universal supports for all students, such as developing a school‐wide recognition system for appropriate behaviour, with secondary or tertiary behaviour support intervention only as needed (Lee and Gage 2020).

Yet, the growing recognition of the importance of ‘environments’ does not mean that behaviour change interventions always, or even often, place social context front and centre (Holman et al. 2018). Like interventions for the wider population, addressing multiple ‘environments’ for a person with disability is more complex and difficult than just focusing on the individual and their needs alone to reduce ‘challenging behaviours’. However, we argue this reorientation towards environments is needed to shape behaviour support practice in a way that is more aligned with a human rights-based approach.

Putting human rights at the centre of positive behaviour support

The CRPD overwhelmingly emphasises removing barriers or changing environments in order to promote the full participation in society by people with disability. By locating the main problem in societal factors external to the individual, the CRPD reflects the social model of disability (Lawson and Beckett 2021). However, the CRPD also applies a human rights lens to disability in acknowledging that societal barriers are only one part of the puzzle – that is, even once these barriers are removed, many people will still need support to enjoy their inherent human rights on an equal basis with others. Since impairments are diverse and environments shape people in different ways, the support each person needs will be unique. The person with disability themselves is therefore the expert on what that support should look like. Further, because impairment is an expected dimension of human diversity, societies have a responsibility to advance social justice for people with disability.

In many ways, PBS aligns with the CRPD in being a values-based approach that seeks to promote and protect the person’s rights through its emphasis on improving quality of life (Chan et al. 2011). However, the biopsychosocial model that is widely recognised as underpinning PBS (Gore et al. 2022) may not be the most suitable for supporting a pivot away from focusing on the person as the source of the difficulty and proactively advancing social justice. The biopsychosocial model suggests ‘challenging behaviour’ results from vulnerability factors, including some inherently biological but mainly psychosocial risks, as well as the social processes that maintain behaviour. A limitation of this model is that it does not explicitly identify ‘environments’ beyond inter-personal interactions; this is subsumed into the ‘psychosocial’. Where the function of a behaviour stems from an aspect of the environment, such as the culture of a supported living home or a policy of locked doors in residential aged care, positive behaviour support strategies that focus solely on the biopsychosocial may not be compatible with a human rights approach.

French et al. (2010) suggest that an increased human rights focus means that clinicians and service providers working with people who have ‘challenging behaviour’ will be exposed to a more intense scrutiny of treatment and service interventions from a human rights perspective, as distinct from a clinical one. They suggest that affirmative human-rights related objectives should be explicit in service provision, and that new methodologies will be needed to make this practice fit-for-purpose with the CRPD. Below, we outline how an existing model could be used as a framework to help shift behaviour support practice towards ‘environments of concern’, and in doing so, better align with the human rights approach.

The social-ecological model as a tool for positive behaviour support

The ‘social-ecological model’ (McLeroy et al. 1988) is one framework that could be used as a tool to support a paradigm shift in both terminology and the practice of PBS. Social-ecological models were first introduced by sociologists in the 1970s as a way to explain child development (Kilanowski 2017), and developed as a reaction to the perceived narrow scope of research of developmental psychologists at the time. The aim of these models was to bridge the gap between psychologists’ behavioural theories that tended to focus on the inherent nature of the child, and ‘big picture’ anthropological theories. That is, they were trying to address the complex interplay between intrapersonal factors and environmental factors in child development.

Figure 1 outlines a social-ecological model for considering multiple ‘environments’ in PBS, both at an individual level (e.g. developing behaviour support plans) and in developing systemic and system wide responses (e.g. see Nankervis and Chan 2021). This model aims to bridge the gap between the biopsychosocial model, and pure ecological models that have been applied in examining organisational aspects influencing ‘challenging behaviour’ (e.g. Olivier-Pijpers et al. 2019).

Figure 1.

A social-ecological model adapted for behaviour.

The model outlines how individuals’ behaviour may be influenced by internal factors such as health needs (e.g. pain) or previous experiences of trauma (Hastings et al. 2013), as well as social or interpersonal factors like how support staff interact with and respond to the person. It also allows for considering the bigger environments around people that are known to impact behaviour and wellbeing, such as the design of the built environment (Roos et al. 2022); the culture of organisations in their approaches to behaviour support, including at the executive level (Olivier-Pijpers et al. 2019); the wider community and society norms around ‘acceptable’ behaviours and inclusion; and the public policies that shape all of these environments and ensure that people’s needs are met (or not). For practitioners and providers who implement PBS, a social-ecological approach to assessment and behaviour support planning might therefore include tools that explicitly aim to understand or address both social and physical environments (e.g. Limbu et al. 2021, Smith et al. 2012) or things like organisational culture (e.g. Craig and Sanders 2018).

Like the CRPD and human rights approaches generally, the social-ecological model locates the main ‘problem’ in societal factors external to the individual, while still placing the individual at the centre stage. However, a true rights-based approach also needs to emphasise self-determination, choice and autonomy (UN CRPD 2006) in developing responses to ‘challenging behaviour’ both at the individual and population level. This means allowing people with disability to determine for themselves if a behaviour is ‘challenging’ or a ‘normal human response’ (Swaffer 2018), and the right to make their own choices and decisions, even when those decisions could put them in harm’s way (dignity of risk) (Marsh and Kelly 2018). For those working at a system level in PBS research and policy, it also means not just consultation with people with disability but co-creation of solutions, and a bigger picture focus on advancing social justice. A pivot further towards a human rights- and environments-based agenda in PBS will require reconceptualising how future professionals are trained, building on traditional person-centred practice to develop a workforce with additional skills as system-level change agents (Vera 2020).

Conclusion

There is an urgent need for a reframing of ‘challenging behaviour’ so that people with disability are viewed, assessed and responded to in ways that are person-centred, evidence-based and with human rights and dignity at the core. The social-ecological model is one tool that may be useful in developing responses that explicitly focus on ’environments of concern’ to improve the wellbeing of people with disability who have behaviour support needs. While any new terminology that is adopted to decrease stigma and increase understanding likely will, through common usage, become stigmatising in its own right, there is value in continuing a robust discourse in relation to how we understand and discuss behaviour of people with disability.

Disclosure statement

Authors MJ and JC are employed by the NDIS Quality and Safeguards Commission. No other potential conflict of interest was reported by the authors.