Introduction

As children develop, they interact with people and the environment around them and learn how to communicate and behave (Dew et al., 2017). Some children can find it difficult to verbally communicate their needs, feelings and preferences and may use behaviours, rather than words, to express how they feel and what they need (Carr & Durand, 1985; Dew et al., 2017; National Institute of Health and Care Excellence [NICE], 2015; Raising Children’s Network [RCN], 2021).

Children’s behaviours can be viewed by others as concerning or challenging if they have the potential to cause harm or they ‘do not fit in with what the environment or society expect’ (Dew et al., 2017, p. 8; McVilly, 2002). In Australia, these behaviours are often called ‘behaviours of concern’ (Jorgensen et al., 2023). The term ‘behaviours of concern’¹ is used to describe:

Any behaviour that is a barrier to a person participating in and contributing to their community that undermines, directly or indirectly, a person’s rights, dignity or quality of life, and poses a risk to the health and safety of a person and those with whom they live or work. (McVilly, 2002, p. 7)

Research evidence shows that some children with disability are more likely to engage in behaviours of concern than children without disability; in particular, children with intellectual disability, autistic children and children with other neurodevelopmental impairments (Dew et al., 2017; Fautha et al., 2017; O’Nions et al., 2018; NICE, 2015; Tevis & Matson, 2022).

Practitioners often provide support to and work with families with children who communicate using behaviours or display behaviours of concern. The way practitioners understand the nature of disability and behaviour influences how they provide support to families to address these behaviours. It is important to understand disability and behaviours using models and approaches that focus on improving children’s quality of life and reduce the use of practices that restrict children’s rights and freedoms (Cortis et al., 2023).

The following sections of this practice guide highlight how particular models for understanding disability and approaches for understanding behaviours can support good practice when working with children with disability who display behaviours of concern.

Understanding disability using different models

How people understand and respond to children with disability who display behaviours of concern is influenced by how they understand the nature of disability. Social attitudes towards people with disability have changed over time, including ideas on the causes of disability and the best ways to support people with disability (Clifton, 2020). These changes in attitudes and understanding are reflected in different models of disability.

Models of disability explain how people, services and systems understand the perceived causes and nature of disability. These models influence how policy, practice and services support people with disability, including how practitioners provide behaviour supports to children with disability and their families. Models of disability can both reflect current attitudes towards people with disability and act as mechanisms for changing attitudes and systems of power and support (Clifton, 2020).

Figure 1 highlights the main models for understanding disability and how they have shifted over time, from understanding disability as a medical problem to understanding the diversity of impairment and that every person with disability should have full and equal enjoyment of all human rights and freedoms (UN, 2006). Figure 2 includes a case study that describes how a child with disability may be provided with different supports depending on which model is used to understand disability.

Figure 1: Different models of disability

 Figure 2: Case study example of provided care based on different models of disability

 Although medical treatment and providing supports and welfare to people with disability is not a problem in itself, the medical and charity models place medical professionals and people who provide services as experts in positions of power over the lives of people with disability. Medical and social supports should rather be framed as a way to empower people with disability and be based on listening to a person’s wants and needs (Clifton, 2020; Oliver, 1990).

The social model of disability is often used in practice and service planning in Australia to support people with disability to participate in society. The social model has sometimes been criticised for not centering individual’s experiences of impairment and failing to empower people with disability (Clifton, 2020; Disability Advocacy Resource Unit [DARU], 2019). However, it is often still considered a valuable tool for understanding structural barriers and can be complementary to the human rights model of disability (Lawson & Beckett, 2021). For example, the International Classification of Functioning, Disability and Health (ICF) is a framework for describing and measuring disability that draws on multiple models of disability. The ICF uses the social model to understand disability as an interaction between individual impairments and environmental factors, and supports countries to align with international human rights instruments (World Health Organization [WHO], 2002).

A human rights-based model of disability acknowledges that a ‘person’s impairment is part of human diversity’ (Australian Council of Learned Academies [ACOLA], 2022, p. 75) and people with disability should have full and equal enjoyment of all human rights and freedoms (UN, 2006). It focuses on empowering people with disability by recognising them as experts in their own experiences who are capable of making decisions about their lives based on their ‘free and informed consent’ (DARU, 2019; UN, 2006, p. 18). It also encourages structural and policy change to advance the rights of people with disability (Clifton, 2020; DARU, 2019). This model has been embedded in Australian policy and practice, including the National Standards for Disability Services, the establishment of the National Disability Insurance Scheme, (NDIS) Quality and Safeguards Commission, and emerging NDIS policies on supported decision making.

 ¹The term ‘behaviours of concern’ is often used in Australia and has been adopted by the NDIS, other government organisations and a number of disability service organisations (NDIS, 2020; Jorgensen et al. 2022). However, terms such as ‘challenging behaviour’ or ‘problem behaviours’ are sometimes used internationally, and by researchers and some practitioners in Australia (The Challenging Behaviour Foundation, 2020; Emerson & Enfield, 2011; Jorgensen et al., 2022).

Understanding ‘behaviours of concern’

As our understanding of disability has developed, so has our understanding of the behaviours of people with disability and how services can best support children with disability and their families. This section discusses some aspects of the behaviour of children with disability – especially ‘behaviours of concern’ – and how children and their families can be supported in a way that aligns with both a human rights-based model and aspects of the social model of disability.

What are ‘behaviours of concern’?

Children both with and without disability may use behaviours to communicate unmet needs or strong emotions. These behaviours are often positive and support children’s development and overall wellbeing (RCN, 2024). Sometimes the behaviours that children use to communicate can feel challenging for children, their families, carers and practitioners in particular contexts and may be labelled as ‘behaviours of concern’. ‘Behaviours of concern’ refer to behaviours that (McVilly et al., 2002):

• create barriers to children’s participation in the community
• undermine children’s rights, dignity or quality of life
• pose a risk to the child’s safety or the safety of people are around them.

‘Behaviours of concern’ is an administrative term, not a clinical diagnosis. Labelling and understanding ‘behaviours of concern’ in practice is useful as it helps to identify groups of behaviours that can affect a person’s safety, rights and quality of life or indicates that a child and their family may need additional behaviour support (Chan et al., 2012). The term is often used by practitioners working with people with disability during behavioural assessments and support planning.

Labelling a behaviour as ‘concerning’ is often very dependent on context, including broader socio-cultural norms, families’ situations and individual experiences, rather than the characteristics of the behaviour itself (Chan et al., 2012; Jorgensen et al., 2022). Furthermore, behaviours are not an inherent characteristic or a direct consequence of a child’s impairment; it is the environment around the child that leads to a behaviour (Dew et al., 2019 Jorgensen et al., 2022). When a child’s environment does not meet their physical, social, emotional, cultural or communication needs, their behaviour is likely a response to those limitations and a way for them to communicate their needs. See Table 1 for examples of how context and environments can influence children’s behaviours and how behaviours are labelled.

The term ‘behaviours of concern’ has been criticised for labelling individuals as a ‘concern’ and framing behaviours as a personal characteristic (Jorgensen et al., 2022). Some researchers have suggested using terms such as ‘environments of concern’ instead of behaviours of concern to encourage greater focus on the environmental causes of behaviours (Jorgensen et al., 2022). Environment-centred terms can support practitioners and families to understand that particular environments elicit concerning responses, not individual impairments or characteristics. It can also encourage responses to children’s behaviours of concern that focus on changing their environments, rather than placing unnecessary restrictions on children with disability; for example, through physical restraint (Jorgensen et al., 2022).

Table 1: Examples of how context and environments can influence children’s behaviour and how they are labelled

A functional approach to understanding behaviours

Understanding that behaviours are influenced by contexts and environments can help practitioners identify effective ways to support the behaviours of children with disability that do not limit children’s rights or freedoms. Research evidence suggests that effective behaviour supports for children with disability aim to identify and address the functions (i.e. the causes and aims) of individual behaviours for each child and include a focus on environmental factors that influence behaviours (Gore et al., 2013; Hall et al., 2020; Hanley et al., 2003). This is called a ‘functional approach’ to behaviours.

A functional approach is based on the view that all behaviour is a form of communication. It aims to identify the functions of a child’s individual behaviours by assessing (Gore et al., 2013; Hanley et al., 2003):

• the environmental causes or influences on behaviours
• what the behaviour is and what the child may be attempting to communicate
• the responses or consequences immediately after behaviours are displayed.

In practice, this is often referred to as conducting a ‘functional assessment’ (Gore et al., 2013). Assessments are personalised to each individual child and the family’s context. When the functions of a child’s behaviours are analysed, it can help practitioners to find ways to alter a child’s environment, so the behaviour is no longer needed, or help children learn alternative, non-concerning behaviours to fill that function (Gore et al., 2013; Hall et al., 2020.) This approach to understanding behaviours encourages a practical focus on removing challenges and barriers in a child’s environment, rather than punishing or restricting a child’s rights to address a behaviour.

A functional approach to understanding behaviours may be part of, or used alongside, a range of other approaches and interventions for supporting children’s behaviours. Positive behaviour support (PBS), for example, is an approach to supporting people with disability that is commonly used in Australia. It is underpinned by human rights principles, focuses on improving the quality of life of people with disability, and uses a functional approach to conduct behavioural assessments and support planning.

PBS can include a range of complementary interventions and practices such as behavioural interventions, attachment-based interventions, trauma-informed practices, social skills training or psycho-educational work. The specific interventions provided to each family as part of PBS may vary but they will all be informed by the results of functional assessments (Gore et al., 2013). Child and family support professionals may work alongside specialist disability behaviour support practitioners to provide elements of positive behaviour support to children with disability and their families. The NDIS Quality and Safeguards Commission website includes information and resources for practitioners, organisations, people with disability and their families on positive behaviour support delivered under the NDIS in Australia.

Practice principles for supporting the behaviours of children with disability

Understanding disability using a social and human rights model, and understanding behaviours using a functional approach, can support practitioners and families to address behaviours of concern and ensure children exercise and enjoy their rights. There are many different interventions underpinned by these models and approaches so the specific interventions provided to families can vary greatly. However, there are certain good practice principles for supporting children with disability who display behaviours of concern and their families that can be applied to most contexts.

This section outlines broad practice principles for professionals working with children and/or families that align with the social and human rights-based models of disability and functional approaches to understanding behaviour. These principles are based on general research evidence and practice knowledge and do not provide guidance on how to deliver specific services or interventions.

Behaviour as communication

Most behaviours are a form of communication. No matter how unusual or concerning a behaviour may seem to others, it is often the most effective way a child knows how to get across their message or meet their need.

Using a functional approach that aims to understand the causes and functions of children’s behaviours can help practitioners and families to find ways to address the behaviour while still allowing the child’s message to be communicated, and without using unnecessarily restrictive practices (Australian Institute of Family Studies [AIFS], 2023).

Building genuine partnerships

Families have a strong influence on children’s development and are a valuable and durable resource to support their behaviour (Dunlap et al., 2001). Building genuine partnerships with the family, particularly primary carers, can be crucial when seeking to influence change in a child’s behaviour. A successful and genuine family–practitioner partnership usually includes 5 key components: communication, respect, trust, commitment and equality (Turnbull et al., 2011).

Table 2 lists examples of how these general components of positive partnerships may be relevant to working with families with a child with disability who displays behaviours of concern.

Table 2: Key components of building a family-practitioner partnership with practice examples for working with families with a child with disability who displays behaviours of concern

Tailored and individualised approach

Working with families can require a very tailored and individualised process. The behaviours and functions of behaviours for each individual child will be different. The impact of these behaviours for each family will also be different.

It is important to look at the specific needs and context of each individual family and how the behaviour support interventions in your toolkit can best suit their needs. For example:

• Consider the family’s biggest concern right now; for example, are the family dealing with any big stresses?
• Consider if the family have their basic needs met. Sometimes the first steps to understanding and successfully addressing the behaviour may be more focused on creating an environment in which behaviour change can happen; for example, getting parents respite, making sure sibling(s) also have the supports they need.
• Consider which supports can be realistically implemented with consistency and sustained over the long term.

Families all have different needs, but you don’t have to be an expert in everything. It’s helpful to be able to assess their needs so you can refer families or bring on other experts to help achieve their goals.

Strengths-based approach

Use a strengths-based approach when understanding children and their families. This means seeing and acknowledging children’s individual strengths alongside the behaviours that can be addressed. It can be hard for a family to list their child’s worst moments during assessments and really painful for a child to hear themselves talked about using deficit-based language; that is, the problems they cause for the family (AIFS, 2023).

It can be useful to think about ways you can make your interactions fun; consider how engaging with children and teaching new skills can feel like a game (AIFS, 2023).

Do least harm in times of stress

There are times when emotions and behaviours are heightened, and it may not be possible in the moment to use a formal response or understand the functions of a behaviour. During these times it can be helpful to remember that the goal is to ‘do least harm’ to the person, yourself and the environment around you. These are not teaching moments where change happens.

Sometimes it can be useful to find a way for families to connect with the child and co-regulate. For example, doing something nice or unexpected like stopping all activities to sing a child’s favourite song at full volume. An informal response that works for that particular family and child in the moment can help to de-escalate situations without causing harm (AIFS, 2023).

Conclusion

The models and approaches that are used to understand the nature of disability and behaviours can influence how behaviour supports are provided to children with disability. Using social and human rights-based models to understand disability can support practices that address behaviours of concern, remove environmental barriers and ensure children have full and equal enjoyment of their human rights. Effective behaviour support practices often include a functional approach to behaviours that aims to identify and address the purpose of the behaviours and the environmental factors that influence them.

There are broad practice principles that align with these models of disability and approaches to behaviours that practitioners can apply across different contexts, interventions and delivery methods. These include understanding behaviour as a form of communication, building genuine partnerships with families and children with disability, using a strengths-based and tailored approach, and trying to ‘do least harm’ when emotions and behaviours are heightened.

Further reading and resources

• This policy and practice paper, from AIFS, summarises the evidence about the effectiveness of parent-focused interventions designed to support children with intellectual disability and autistic children who display behaviours of concern.
• This AIFS webinar discusses how professionals can work alongside parents who have a child with disability who communicates through behaviour.
• This AIFS webinar explores how the social model of disability can inform approaches to practice and parenting to better support children’s mental health, wellbeing and development.
• This AIFS short article outlines what supported decision making is, why children with disability can and should be engaged as decision makers, and the evidence about using supported decision making to support them towards exercising this right.
• The NDIS Quality and Safeguards Commission provides guidance and resources to support participants and providers to improve the quality and safety of NDIS services and supports.
• This NDIS webpage provides information and guidance on behaviour support and restrictive practices for practitioners and providers delivering NDIS services.
• This NDIS policy supports people to understand what supported decision making is, and how we can better support people with disability to make decisions in the NDIS.
• This library of resources from Western Australia’s Individualised Services (WAiS) provides information, guidance and practice resources to help professionals implement supported decision-making practices in their work with people with disability.

How this resource was developed

This practice guide is part of a broader evidence package on supporting children with disability who display behaviours of concern for AIFS Child Family Community Australia (CFCA) information exchange. This resource is based on a rapid review and synthesis of international empirical literature and knowledge from expert practitioners and people with lived experience of caring for children with disability. It also includes reference to content shared by presenters in the CFCA webinar Behaviour support for children with disability: working alongside parents.

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