In 2008, the United Nations Convention on the Rights of Persons with Disability (CRPD) was established. This international treaty was significant as it was the first that expressly articulated the needs and concerns of people with disabilities about their rights, as well as the obligations of countries to protect and uphold those rights (Didi et al., 2018). The CRPD is underpinned by a human rights model of disability. The human rights model of disability recognises that disability is a natural part of human diversity that must be respected and supported, that people with disabilities have the same rights as everyone in society, and that disability must not be used to deny or restrict peoples’ rights (Lawson & Beckett, 2021). According to the United Nations (n.d):

The Convention follows decades of work by the United Nations to change attitudes and approaches to persons with disabilities. It takes to a new height the movement from viewing persons with disabilities as “objects” of charity, medical treatment and social protection towards viewing persons with disabilities as “subjects” with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society.

It has been said that the CRPD represents a “paradigm shift” in how disability policy and practice are framed and implemented around the world (Lang, 2009), as it is the first legally binding instrument by which people with disabilities and their advocates can hold their respective governments accountable for the promotion and enforcement of disability rights. Countries who have signed and ratified the CRPD have made a public commitment to enacting policies designed to protect and uphold the human rights of people with disabilities in all aspects of social and political life, including in the areas of education, employment, healthcare, and justice.

Protecting and Upholding the Rights of People with Disabilities

Article 1 of the CRPD defines people with disabilities (PWD) as “…those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others” (2006; p. 4). In Australia, it is estimated that one in five people have a disability, with approximately 22% diagnosed with a neurodevelopmental disability (e.g. autism and/or an intellectual disability; Australian Bureau of Statistics, 2018). Research suggests that people with PWD experience multiple and persistent human rights violations (Drew et al., 2011; Fyson & Kitson, 2010; Koh et al., 2021; Tarulli et al., 2004). People with disabilities have historically been removed from their families and placed in congregate care or institutional settings, which has limited their opportunities for making choices and experiencing inclusion and community participation (Burrell & Trip, 2011). Researchers have found that PWD may be at an increased risk for discrimination, abuse, neglect, and mistreatment (Didi et al., 2018; Koh et al., 2021), particularly if they have communication difficulties or differences. Third, PWD may have fewer opportunities to make their own decisions about important aspects of their life, such as where they go to school, where they live and work, and what they do for fun (Bigby et al., 2017; Williams and Porter, 2017). This may be due to the perception that PWD are not capable of making these decisions (Bigby et al., 2023) or due to the presence of systematic barriers that prevent their full and active participation and inclusion in society (McVilly et al., 2022). Finally, there is often a power imbalance between professionals and PWD (Chan et al., 2011), with professionals often making decisions for and about the PWD without considering their rights, preferences, and values. Thus, protecting and upholding the rights of PWD remain a significant area of concern.

There have been significant challenges in implementing the CRPD for PWD who display challenging behaviour (Chan, 2016). Challenging behaviour has been defined as behaviours that occur at a sufficient intensity, frequency, or duration to pose a risk to the safety and wellbeing of the person or others, and that are likely to result in the person experiencing exclusion from the community (Emerson and Einfeld, 2011). Topographies of challenging behaviour include aggression, self-injury, property destruction, absconding, and inappropriate sexualised behaviour (Bowring et al., 2019; Perry et al., 2018). The continued occurrence of challenging behaviour is associated with an increased risk of injury to the PWD or others, exclusion from the community, and abuse, and in some cases may result in the person being accommodated in residential care, inpatient, or detention centres (Bigby, 2012; Chan, 2016; Robertson et al., 2004). As such, the identification of safe and effective approaches for reducing challenging behaviour displayed by PWD is important.

Researchers have found that PWD, particularly people with neurodevelopmental disabilities, may be subjected to restrictive practices as the first or only way to address their challenging behaviour (Richardson et al., 2020; Webber et al., 2019). In Australia, a restrictive practice (RP) is defined as a practice or intervention that has the effect of restricting the rights or freedom of movement of the person, and includes physical, mechanical, and chemical restraint, and seclusion (Australian Government Department of Social Services, 2014). If misused, overused, or used without proper oversight, restrictive practices may conflict with the human rights of PWD and may contravene signatories’ commitments as outlined in the specific articles included within the CRPD (Chan, 2016; Leif et al., 2023). Specifically, the use of restrictive practices that limit a person’s freedom of movement conflicts with the person’s right to bodily autonomy (Article 3), liberty and security (Article 14), and independent living and community inclusion (Article 19). The use of restrictive practices as the sole means to manage challenging behaviour conflicts with the person’s right to receive safe and evidence-informed therapeutic supports to promote habilitation and rehabilitation (Article 26). Finally, the misuse of restrictive practices may conflict with the rights of the person to be free from exploitation, violence, and abuse (Article 16) and may result in physical or psychological harm to the person (Bonner et al., 2002; Paterson et al., 2003).

Human Rights and Positive Behaviour Support

Positive behaviour support (PBS) has been described as a values-led approach to supporting people with and without disabilities, with a goal of using a variety of evidence-based teaching and behaviour support strategies to help people achieve enhanced community presence, choice, personal competence, respect, and community participation (Carr et al., 2002; Kincaid et al., 2016). It has been stated that PBS is an approach that integrates the conceptual and scientific framework of applied behaviour analysis with the values of the disability community to achieve comprehensive lifestyle changes and enhanced quality for life for PWD and their families (Carr et al., 2002). Kincaid and colleagues (Kincaid et al., 2016) proposed an updated definition of PBS to emphasise its application across populations, settings, and levels of implementation:

PBS is an approach to behavior support that includes an ongoing process of research-based assessment, intervention, and data- based decision making focused on building social and other functional competencies, creating supportive contexts, and preventing the occurrence of problem behaviors. PBS relies on strategies that are respectful of a person’s dignity and overall well-being and that are drawn primarily from behavioral, educational, and social sciences, although other evidence-based procedures may be incorporated. PBS may be applied within a multi-tiered framework at the level of the individual and at the level of larger systems (e.g., families, classrooms, schools, social service programs, and facilities) (p. 71).

This proposed definition maintains a commitment to the use of nonaversive and positive approaches that are respectful of a person’s dignity and aims to enhance the person’s wellbeing and quality of life. The definition also recognises the need for PBS to address systemic issues that prevent people with disabilities from experiencing inclusion, choice, and self-determination. Based on these features, the definition of PBS proposed by Kincaid et al. (2016) might be considered consistent with the human rights model of disability.

The Need for Rights-Based Positive Behaviour Support

In Australia, behaviour support practitioners are now responsible for delivering PBS-based services to people in ways that protect and uphold the rights of PWD and aim to reduce and eliminate the use of restrictive practices (Australian Government, 2018). However, few studies have explored ways to deliver PBS in ways that protect and uphold the rights of people who receive these services. French et al. (2010) noted that the CRPD establishes a distinctive disability rights paradigm; one in which disability is not viewed as something to be “treated” or “cured” but rather one in which disability is a result of an interaction between a person and their environment. There are several potential implications for this disability rights paradigm for PBS practitioners. First, practitioners should explore the interaction between a person’s behaviour and their environment to discover how the environment is contributing to the continued occurrence of behaviours of concern. The idea that behaviour is influenced by environmental factors is consistent with the assumptions of PBS (Hastings et al., 2013). According to Jorgensen et al. (2023), those implementing PBS should focus on the identification and elimination of environments of concern and, conversely, the development of supportive environments that accommodate the person’s needs and minimise triggers for behaviours of concern. Skills teaching can then be used to help the person develop new repertoires of behaviour (e.g. functional communication, tolerance, choice making; Rajaraman et al., 2022).

Secondly, practitioners should seek to create contexts for PWD who display challenging behaviour where they experience equality or conditions of life equivalent to their non-disabled peers. A third and related implication of the CRPD for PBS practitioners is that PWD should be supported to experience inclusion. Notions of inclusion should extend beyond physical place and consider the degree to which PWD can exercise choice (for example, where and with whom they live, learn, and work), access a continuum of safe and effective supports, and access the same facilities and resources as their non-disabled peers (McVilly et al., 2022). Finally, practitioners should seek to create contexts in which PWD are free from discrimination. This may be accomplished by ensuring that others (for example, educators, employers, medical professionals, and support workers) provide accommodations or modifications to ensure PWD are able to participate in education, employment, healthcare, and recreation on the same basis as others.

Chan et al. (2011) extended the ideas presented by French et al. (2010) to further explore the contextual fit between PBS and the human rights of PWD. Chan et al. noted that some practices commonly used with people with disabilities who display challenging behaviour may conflict with their human rights, such as the use of restrictive or aversive practices in response to behaviours of concern or the use of practices that do not consider and address the underlying reasons why the behaviour of concern is occurring (i.e. behaviour function). The authors argue that the PBS framework may help practitioners shift their focus from delivering practices that aim to reduce challenging behaviour as the primary goal of intervention, to the delivery of practices that help the PWD experience enhanced quality of life. In doing so, practitioners may be better equipped to focus on changing problematic environments that impose restrictions and limit opportunities for the PWD to experience choice and control in their own lives. In addition, PBS practitioners should emphasise the delivery of supports that help the person communicate their likes, dislikes, wants, and needs, as effective communication will enable the person to express their preferences and choices. By changing problematic environments, supporting effective communication and ensuring PWD have opportunities to make choices and express their preferences (Rajaraman et al., 2023), reductions in behaviours of concern may be achieved as a side effect, rather than primary goal, of PBS.

Although Australian behaviour support practitioners have a critical role to play in protecting and upholding the rights of PWD who receive PBS-based services, there is no research published to date that explores the specific strategies used by these practitioners to protect and uphold the rights of the individuals they serve. The strategies described by French et al. (2010) and Chan et al. (2011) provide a useful starting point for discussions about ways to uphold human rights in PBS practice. However, it is unknown whether behaviour support practitioners use any of these strategies in their professional practice. Therefore, the first aim of the present study was to explore the strategies that behaviour support practitioners use in practice to protect and uphold the rights of PWD as part of the provision of PBS-based services. The second aim of this study was to synthesise the results with the findings of other peer reviewed studies to propose a RIGHTS-based model for delivering PBS in ways that protect and uphold the rights of individuals who receive these services.

Method

Participants

In total, 172 participants consented to participate in the survey. Out of the 172 respondents, 98 participants responded to the open-ended survey question. A summary of the demographic characteristics of respondents is presented in Table 1.

Table 1 Participant demographics (n = 98)
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Procedures

Participants were recruited using study email, social media, and snowball sampling. The first author contacted service providers in their professional network who offered NDIS-funded behaviour support services, inviting them to complete the survey via email. The email contained a summary of the study’s purpose and aims, contact details of the authors, and a link to access the survey on Qualtrics®. Additionally, the survey link was shared on social media platforms by the research team. Participants were invited to access the electronic survey at a convenient time and place. Before answering any questions, participants were asked to read a brief explanation of the survey’s aims, potential benefits and risks of participation, the voluntary nature of participation, and how to contact the research team with questions. They were then asked to review the eligibility criteria to determine if they were eligible to participate. After providing consent by ticking a box at the end of the explanation sheet, participants were able to view and respond to the survey questions.

Measures

The purpose of the current study was to conduct a qualitative thematic analysis of the strategies that behaviour support practitioners use to protect and uphold the human rights of PWD as part of the provision of positive behaviour support services. Participants’ responses to the open-ended survey question were analysed to identify key themes. The question was phrased as follows: What strategies do you use to respect and uphold the rights of clients when delivering behaviour support?

Data Analyses

Thematic analysis was used to analyse participants’ responses following Braun & Clarke’s (2022) guidelines. Specifically, a process of inductive thematic coding was undertaken. The following five-step process was used to identify and extract themes that were relevant to the research questions. These steps included the following: (1) familiarisation with the data, (2) initial code generation, (3) searching for and code “themes” across responses, (4) review the coded themes, and (5) create clear definitions of the final themes.

The first and fourth author read and reread all participants’ responses to identify potential themes for code generation. When reading for these themes, the authors looked for specific keywords and patterns of language used by participants (i.e. semantic themes), as well as phrases or words that functionally described key themes while not using the same specific language (e.g. latent themes). Following this, the first author created a coding frame that included initial definitions to support reliable thematic coding across responses. After developing the initial codes and working definitions, the fourth author assessed the validity of the initial codes and working definitions by rereading participants’ responses. Agreement was established on the coding frame and definitions, without a need for a consensus meeting. Simultaneous and independent coding of the open-ended responses was undertaken using a coding spreadsheet created in Microsoft Excel. This spreadsheet included each thematic code presented along the top row of the spreadsheet, and each participant’s open-ended response presented down the left-hand column. Each response could then be coded for any relevant latent or semantic themes identified within the response. By identifying multiple themes within each response, the researchers were able to flexibly identify the co-occurring themes identified by participants in their own words. For example, a participant’s response “Always make sure plans are person centred, connecting clients with advocates and promoting their voice” was coded as representative of the themes “Use Person-Centred Planning”, “Emphasise Two-way Communication”, and “Advocate and Educate Others About the Rights of People with Disability”. Each coding response was scored with a 1 in the corresponding theme column, allowing for easy tabulation, and an analysis of the frequency with which specific themes were identified within all responses.

The results of this coding process were compared, compiled, and tabulated. At this stage, themes were consolidated from 12 sub-themes into six broad, conceptually consistent themes. This was done by combining themes together that shared latent or semantic similarities. Each theme, and accompanying definition, was then modified to reflect the changes. The overall frequency of coding for each theme was calculated by totalling the scores for each thematic column (i.e. adding the 1’s in each column). A percentage of responses that were coded for a specific theme was also calculated. This was done by dividing the total frequency of codes for each theme by the total number of responses overall (N = 98) and then multiplying by 100.

Interrater Reliability

Initially, the first author read all participant responses to the open-ended question and developed a coding frame with definitions. The fourth author then read all participant responses and assessed the validity of the definitions and codes. No changes were suggested. Following this, responses for each open-ended question were read and coded by the fourth author, with the first author independently coding 30% of responses. An exact agreement method was used in which each open-ended response was reviewed to determine whether both raters agreed about each theme. This resulted in six opportunities for agreement or disagreement for each open-ended response (corresponding to the six thematic categories). Interrater reliability was then calculated by dividing the number of agreements by the number of agreements plus disagreements and multiplying by 100%. The mean point-to-point agreement was 90%. After independent coding was completed, a consensus meeting was held, and disagreements were resolved, with full agreement established.

Results

Six overarching themes were identified following coding of participant responses to the open-ended question: What strategies do you use to respect and uphold the rights of clients when delivering behaviour support? Themes are described and supplemented with illustrative embedded quotes from participants. Quotes were selected that were representative of the themes; and in some cases, quotes were edited slightly to increase clarity and enhance understanding. Edits are indicated with an omission marker (…) or placed in brackets within the quote.

Theme 1: Using a Person-Centred Approach

The most common strategy used by behaviour support practitioners to protect and uphold the human rights of PWD in their work was to use a person-centred approach (n = 57). For example, participants noted that they “make sure [positive behaviour support] plans are person centred”, and ensure that the support provided “looks at improving their quality of life, in whatever capacity that may mean”. One participant stated that “person centred support is the heart of what we do. We utilise this practice to ensure the person is part of the entire process at every opportunity possible, along with their families and supports”. Other participants confirmed that including the PWD in the design of their own supports was important, with participants highlighting the importance of “involving the client in the process” by “utilising client centred practice [to] include the client as much as possible in the creation of their plan” and to “ensure [the PWD’s] voice and opinions are sought and included”. Embedded in participants’ responses was the need to centre the voices and choices of PWD in the behaviour support planning process. One participant noted that they include the voice of the PWD by “including them in the process by explaining my role, discussing what frustrations they experience, what things they would change if they could, and discussing how they would like others to support them when there are frustrations and support them in general” and another participant stated that use “a person centred approach that keeps their needs and rights at the forefront of decision making and planning”. Practitioners highlighted the importance of delivering behaviour support that maximised “choice and control” for the PWD and focused on “socially significant” behaviour change. Other practitioners acknowledged the importance of building the capability of support team members to understand and use person-centred approaches, with one practitioner noting, “we utilise our supervision and training to reinforce the importance of person-centred practice and work on developing any lacking skills…” on part of support team members.

Theme 2: Facilitating Two-Way Communication

Behaviour support practitioners highlighted the importance of open two-way communication during the provision of positive behaviour support services as a way to protect and uphold the human rights of PWD in their work (n = 45). One practitioner emphasised the importance of communication to facilitate “relationship building as means to understand [the PWD] lived experience”, another highlighted the need to “communicate directly with the client as much as possible to understand their needs and wants”, and a third stated, “listen and get to know [the PWD] and their story and their journey, as well as accounts from those that work with them”. Practitioners noted the importance of communicating with the PWD and their family and care team using “using easy English formats to communicate”, “simplified language”, or using visuals, augmentative communication systems, or other accessible forms of communication such as “talking mats” when engaging directly with the PWD. Another practitioner felt that it was important to “plans and strategies easier to read”. Relatedly, practitioners felt it was important to explain the purpose and outcomes of assessments and behaviour support strategies. This type of “open and honest communication with parents and carers” was thought to help PWD and their families to make “informed choices” about how they would like to be supported. One practitioner noted that they started with the following assumption: “I’m not here to change you, I’m here to listen to you. I want to hear about how you like to be treated (especially when you’re stressed), and then I will coach your caregivers about how best to support you”. Practitioners felt that it was important to “make time to listen to clients and their families” during all phases of behaviour support, to ensure that the support strategies were meeting the unique needs of PWD and adapted as the needs of the PWD changed over time. One practitioner noted “I engage with the person and ensure that I can help to ensure their voice and opinions are sought and included”. Another practitioner stated, “I explain my role, discuss what frustrations they experience, what things they would change if they could, and discuss how they would like others to support them when there are frustrations and…in general”. Finally, practitioners noted that frequent communication with support team members about the preferences, strengths, and needs of the PWD was important. Practitioners felt that frequent two-way communication with support team members was critical to “support staff to understand client strength and needs and implement plans effectively”, and this could be accomplished by “engaging in regular contact with the client and supports”.

Theme 3: Using Personalised Behaviour Support Strategies

Practitioners felt that the use of safe and personalised behaviour support strategies that were developed based on an understanding of behaviour function helped them to protect and uphold the rights of PWD by helping them “aim to implement the least restrictive practices” (n = 41). Practitioners noted that conducting a “functional behaviour assessment to understand the function” of behaviours of concern helped them to “develop high quality behaviour support plans [with] clear fade out plans for restrictive practice” or “person centred, individualised plans” and helped them “explore alternatives” to the use of restrictive practices. One practitioner stated, “I look at their rights first and work towards least restrictive solutions if they have established restrictive practices”. Practitioners felt that behaviour support should focus on “identifying a functionally equivalent replacement behaviours” for the PWD, such as a safer and more understandable form of communication, and “supporting the person to acquire the replacement behaviour”. One participant highlighted that behaviour support plans should “support people to have agency, learn new skills and be involved in daily activities”. Another practitioner stated that the “least restrictive methods [should be] used” in conjunction with “strategies aimed at improving quality of life…, maximising the amount of community engagement, and…maximising choice and control” for the PWD. Developing individualised behaviour support strategies for the PWD helped practitioners ensure that the least restrictive strategies (those that imposed the fewest and shortest restrictions) were used as part of the PWD behaviour support plan. Practitioners highlighted the importance of “using restrictive practices as a last resort”, “working closely with the family or care team to understand why restrictive practices are in place”, “reviewing and assessing the impact of restrictive practices regularly”, and seeking “opportunities to fade restrictive practices”.

Theme 4: Establishing Organisational Policies and Procedures that Protect and Uphold Rights

Practitioners noted that more systematic approaches, beyond the provision of individualised behaviour support plans, were needed to ensure the rights of PWD were protected and upheld in service delivery (n = 41). Practitioners felt it was important for service provider organisations to make an “organisational commitment” to understand, protect, and uphold the rights of PWD. To do so, practitioners highlighted the need for organisational policies and procedures to clearly describe the steps that the organisation and all its employees will take to understand, protect, and uphold the rights of PWD. One practitioner stated that organisations should possess “…high quality policies and procedures that uphold people’s rights and help protect vulnerable people from exploration and abuse”. Another practitioner shared that “within our organisation, [we use] the NDIS registration process and requirements [to articulate how we] uphold the rights of clients at multiple levels, from initial access to service, right through to outcomes, complaints etc.”. Some practitioners felt that organisations could support their employees to protect and uphold the rights of PWD by teaching employees to “respect individual differences [including neurodiversity] and each person’s unique lived experience”, and to “respect each person’s right to choose and to take risks”. Other practitioners highlighted that, to protect and uphold the rights of PWD, all professionals working within an organisation should adhere to a set of “ethical guidelines” in practice. These ethical guidelines should ensure that practitioners “maintain the confidentiality and privacy” of the PWD and obtain “informed consent” for behaviour assessment and support services. Practitioners felt that organisational approaches for protecting and upholding the rights of PWD should empower PWD, their families, and all support team members to speak up when witnessing potential infringements to a person’s human rights or when witnessing the misuse of restrictive practices. One practitioner stated that “using supervision, my team members and I talk through concerns and then report concerns via the appropriate channels if abuse or neglect is currently happening” and another felt that organisations should support practitioners to “advocate for the client and contact the [NDIS Quality and Safeguards] Commission if there are concerns about their wellbeing”. Other practitioners felt that organisations needed to adopt a “zero tolerance” stance for abuse, neglect, and violence against PWD, with employees being supported to “report providers and families should concern of abuse, exploitation and neglect be evident, to the relevant authorities to investigate” or to “call out poor practises” when they are witnessed. Finally, practitioners felt that organisations needed to provide a clear and easy way for the PWD and their family to make a complaint or give feedback to the practitioner or service provider organisation, with one practitioner noting “my organisation provides information [about how] to lodge a complaint or…switch providers” if the PWD or family are unhappy with the services. Another practitioner shared that they “provided clients and their stakeholders the opportunity to give feedback monthly (for restrictive practices) and quarterly (for general intervention) about the impact of behaviour support services for them”.

Theme 5: Educating Others About Rights of PWD

Related to the theme above, practitioners felt that, to protect and uphold the rights of PWD as part of the provision of behaviour support, it was important to educate others about rights (n = 28). Some practitioners felt it was equally important to teach the PWD about their rights and to support them to advocating for their rights by “continuously raising [issues related to their] human rights and discussing their needs within care team and family meetings” or by “clearly explaining their rights…in an easy read document I send to them to keep on record”. Other practitioners highlighted the importance of “talking about human rights with others” including families, other professionals, and the wider community “through education, coaching, training and advocacy” or by sharing resources or holding information sessions. One practitioner noted that it was important to “educate others on how [the use of restrictive practices may] impinge on human rights”, another felt that their role was to “explain how the rights of the person are impacted” because of the use of specific practices, and yet another practitioner felt it was important to specifically “educate caregivers on restrictive practices and how these restrict a client’s rights”. Participants noted that it was important to provide education and training to families and support team members on the “Disability Discrimination Act”, the “Convention on the Rights of People with Disabilities”, and the “Equal Opportunity Act”. One practitioner shared, “if someone is not respecting the rights of others, then I see this as an opportunity for consultation, support, and further learning”. Finally, some practitioners felt that a part of their role was to “support people to link in with advocacy agencies such as VALID” or other advocacy services who were knowledgeable about human rights and who could support the PWD to learn about and experience their rights in all aspects of life.

Theme 6: Taking a Holistic Approach

Finally, practitioners emphasised the importance of taking a holistic approach when developing and delivering behaviour support services (n = 27). Of note, practitioners felt that behaviour support should make enhanced quality of life and improved wellbeing for the PWD a key priority, rather than focusing on the reduction of behaviours of concern in isolation. One practitioner noted that “one of the biggest things is simply going back to basics and looking at the quality of the person’s life before even looking at behaviours”. Another practitioner stated that they aimed to “take a whole of client approach, always remember that they are person first” and a third highlighted the importance of continually “assessing quality of life and socially valued outcomes, ensuring that at all times we are working towards safety, dignifying outcomes, and person-centred care”. Several practitioners highlighted the importance of including “quality of life assessments” as part of the provision of behaviour support. To enhance the quality of life and wellbeing, practitioners felt that it was important to consider the needs of the PWD in different areas of life, including mental health, physical health, and personal relationships. One practitioner stated professionals should develop behaviour support strategies that “maximise the amount of community engagement and [opportunities for] choice and control [for the PWD], while advocating for other services (i.e. speech pathology) that enhance communication skills of clients”. Other practitioners felt it was important to consider the impact of trauma on behaviour and to support the PWD by developing “trauma informed support plans”. Practitioners felt that provision of positive behaviour support should ultimately help the PWD experience greater participation and enhanced outcomes in the areas of relationships, recreation, education, employment, and healthcare.

Discussion

The objective of the current study was to identify specific strategies that Australian behaviour support practitioners use to protect and uphold the human rights of the individuals they serve. The findings add to a growing body of research about ways that professionals might protect and uphold the rights of people with PWD in the provision of behaviour support services (Chan et al., 2011; French et al., 2010). Six overarching themes were developed based on an analysis of participants’ responses to the open-ended question. The most common strategy used by behaviour support practitioners to protect and uphold the human rights of PWD in their work was to use a person-centred planning approach, which involved including the person in the development of their own supports. Practitioners also highlighted the importance of open two-way communication during the provision of positive behaviour support, as this allowed them to build strong relationships with the PWD, their family, and their support team and solicit frequent input from the person about their wants and needs.

Practitioners felt that the use of safe and personalised behaviour support strategies that were developed based on an understanding of behaviour function helped them protect and uphold the rights of the people they served, since such strategies emphasised environmental changes and the teaching of new skills. Some practitioners perceived some of these strategies to be less restrictive than the use of restrictive practices as part of the provision of positive behaviour support, suggesting that behaviour support strategies might fall on a continuum from least to most restrictive. However, it should be noted that restrictive practices are crisis management strategies that should only be used in situations where there is a need to keep the person or others safe from significant harm. We encourage practitioners to consider using non aversive reactive strategies during the provision of positive behaviour support that emphasise the safe and rapid de-escalation of challenging behaviour (such as reinforcement of precursor behaviour and redirection) and avoid reactive procedures (such as escape extinction or planned ignoring) that might escalate the severity of the behavioural episode and result in the use of a restrictive practice (see Spicer & Crates, 2016).

Practitioners also felt that more systematic approaches, beyond the provision of personalised behaviour support plans, were needed to ensure that the rights of PWD were protected and upheld in service delivery. More systematic strategies involved the development of organisational policies and procedures that described how the rights of service recipients would be protected and upheld, the creation of complaint and feedback systems that were accessible to service recipients and their families, and teaching others about the human rights of people with disabilities. Finally, practitioners emphasised the importance of taking a holistic approach when developing and delivering PBS-based services. Holistic approaches were those that did not focus on behaviour reduction in isolation. Rather, they focused on addressing individual needs in the areas of health, education, employment, relationships, and quality of life more broadly.

Based on the data collected and themes developed in the current study, we propose a new RIGHTS-based model of PBS to potentially guide the delivery of NDIS-funded behaviour support services in the Australian context. This model provides a framework for delivering PBS-based services in ways that are consistent with the human rights model of disability. The RIGHTS-based model is underpinned by six guiding principles, which are described in Table 2.

Table 2 A RIGHTS-based model of positive behaviour support
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In what follows, we synthesise the results of the current study with other research findings to provide a set of preliminary, evidence-informed recommendations for behaviour support practitioners about ways to protect and uphold the rights of PWD who receive PBS-based services. Recommendations and their alignment to specific articles included in the CRPD are summarised in Table 3. We realise that these principles and recommendations may be read by practitioners and PWD who live, learn, and work in different countries and contexts around the world. Therefore, we encourage readers to consider ways to adapt our principles and recommendations to ensure they are culturally and contextually appropriate and safe. In addition, we encourage readers to think of the principles in the model as interactive and intersectional, rather than as siloed or sequential activities. In other words, there is likely overlap between the different principles. For example, teaching and telling others about the rights of PWD may lead to greater respect for the person’s dignity and self-worth on part of professionals and support team members. Including the person in decisions that are about them and centring the voices and choices of PWD in the behaviour support planning process may result in the identification of socially valid goals and behaviour support strategies that lead to improved quality of life for the person. We encourage practitioners, service provider organisations, and regulatory agencies to consider the findings and recommendations provided in the current study as a starting point for further conversations about ways to protect and uphold the rights of PWD in the provision of PBS-based services.

Table 3 Practical recommendations for behaviour support practitioners about ways to protect and uphold human rights in PBS
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Implementing Recommendations in Practice

Respect the Person’s Dignity and Self-worth

Researchers have found that disrespectful behaviour can have negative effects on physical and psychological wellbeing (Allan & Davidson, 2013). Thus, respect for a person’s dignity is a universal ethical principle in most helping professions. Respect for a person’s dignity and self-worth is also a general principle of the CRPD (see Article 3). Despite this frequent reference to respect for the dignity of persons in ethics and law (McCrudden, 2008), it is often not clear what it means in practice to respect the dignity of a person. The concept of dignity is closely related to the concepts of respect, privacy, and autonomy. With this in mind, there are several practical things practitioners can do as part of the provision of behaviour support services to respect the dignity of the PWD. First, practitioners should take steps to respect the privacy of the person. Respecting a person’s right to privacy can be upheld by keeping information about the person confidential and only sharing information once informed consent has been obtained. Additionally, practitioners should assist the PWD to maintain personal privacy during activities of daily living, such as bathing, using the bathroom, or dressing. Practitioners can also assist the PWD to identify specific types of personal information which is private and confidential, such as personal medical and financial information.

Secondly, practitioners should take steps to respect the autonomy of the PWD. Respecting a person’s right to autonomy can be upheld by providing information to the person in ways that they can understand, such as in easy read format or using alternative forms of communication. By presenting accessible information, the person may be more able to make informed choices about their own life and how they would like to be supported. Respect for autonomy can also be upheld by providing frequent opportunities for the person to make choices and express their preferences throughout the behaviour support process. Rajaraman et al. (2023) provide several research-informed recommendations for supporting PWD to make choices, including conducting frequent preference assessments, offering frequent choice-making opportunities, providing individuals with time to make choices, encouraging individuals to make choices, allowing individuals to experience the outcomes associated with their choices, and providing both closed and open-ended choice options.

Finally, practitioners can respect an individual’s dignity and self-worth by actively taking steps to prevent discrimination, exploitation, and mistreatment of the PWD. Practitioners should ensure that service settings are safe and appropriately staffed. Staff working within these service settings should receive ongoing training in ways to respect the dignity, privacy, and autonomy of the people they support (Friedman, 2021). Easy to use systems should be developed to assist support staff to report instances of exploitation and mistreatment. Finally, PWD and their families should be supported and encouraged to identify and report instances of exploitation or mistreatment. Ultimately, practitioners and service provider organisations should work together to create cultures within service settings in which “it is everyone’s responsibility to challenge such violence [towards PWD] and to challenge it at every level” (Brown, 2002; p. 26).

Include the Person in Decisions That Are About Them

The CRPD asserts that people with disabilities have a right to make their own decisions and should be supported to do so (see Articles 3, 12, and 21). Supported decision-making has been proposed as a model for assisting people who have impaired capacity for decision-making due to their disability to be supported to participate in the decision-making process to the greatest extent possible (Gooding, 2013). According to Gooding (2013), supported decision-making is a model in which a PWD is provided with the necessary supports and accommodations to make and communicate their own preferences and wishes, rather than delegating this decision-making role to another person. Supported decision-making is often contrasted with substituted decision-making, in which a person (often a legal guardian) is appointed to make decisions for the person, typically to provide protection against abuse and exploitation by others or potentially harmful actions by the individual themselves. Rather than viewing supported and substituted decision-making as binary, practitioners may benefit from viewing these concepts on a continuum. On one end of the continuum is fully autonomous decision-making (with no intervention or support required), followed by a stepped model of supported decision-making, and finally fully substituted decision-making (by a legal guardian) on the other end of the continuum. The amount of support provided to the PWD, either by legal guardians, practitioners, support workers, or other trusted individuals, will vary based on the type of decision to be made.

Regardless of where the PWD is on the decision-making spectrum, practitioners should assist the person with disabilities to make their own decisions to the greatest extent possible and should help family members and support workers use a supported decision-making approach. For example, support workers are well-placed to help the person make decisions about aspects of their daily life, such as what to do, where to go, what to eat, and who to spend time with. By contrast, family members or legal guardians may need to provide a higher level of support and play a greater role in helping the person make decisions about where and with whom to live, how and when to access health and medical care, and how to manage personal finances. To the greatest extent possible, decisions should be made with and by the PWD, not for the person.

Get to Know the Person and their Family

Researchers have found that a strong therapeutic alliance can improve outcomes for people who are seeking help with a variety of concerns (Cameron et al., 2018; Horvath et al., 2011). Although the therapeutic alliance has primarily been explored in the context of psychotherapy, its principles can be generalised to the behaviour support context (Cameron et al., 2020). In behaviour support, the therapeutic alliance might refer to the development of a trusting relationship between the PWD, support team, and practitioner that enables the person and support team to participate in the behaviour support process. In a therapeutic alliance, the practitioner attempts to minimise power imbalances in the therapeutic relationship by working as an equal partner with the PWD and their support team. Cameron et al. (2020) argue that it is particularly important to explore the nature of the alliance in therapy with PWD as the risk and impact of a power imbalance between practitioners and clients may be particularly salient when working with people who are often disempowered and disadvantaged in a range of relationships. A strong therapeutic alliance may form the foundation from which practitioners can work with PWD in ways that are respectful of difference and accepting of disability as part of human diversity (Article 3).

Bordin (1979) suggested that the therapeutic alliance is comprised of three interrelated components: (1) goal setting, in which the practitioner, person with disabilities, and support team members work in partnership to develop goals that work towards meaningful outcomes for the person; (2) planning and task assignment, in which the practitioner, person with disabilities, and members of the support team work in partnership to decide what actions will be taken to support the person achieve their goals; and (3) relationship building, in which the practitioner, person with disabilities, and support team members develop rapport, trust, and confidence with one another. In one study, Cameron et al. (2020) conducted interviews with people with intellectual disabilities to learn more about their perspectives of the therapeutic alliance and found the participants valued therapeutic relationships that emphasised shared goal setting and action planning, celebrated achievements, and provided frequent opportunities for discussion and feedback about what aspects of the relationship are working well and what could be improved. In the behaviour support context, goal setting, action planning, progress monitoring, and discussion may occur within the context of person-centred planning.

Sanderson (2000) notes that person-centred planning can be used to answer two fundamental questions: (1) “Who are you, and who are we in your life”, and (2) “What can we do together to achieve a better life for you now, and in the future?” (p. 2). Sanderson described five core components of person-centred planning: (1) the voice and choices of the PWD are at the centre of the planning process, (2) family and friends of the person are invited to participate in the planning process as partners, (3) the support plan focuses on what is important to the PWD, (4) the support plan results in meaningful action that moves the person towards experiencing a better quality of life and reflects what is possible (not just what is available), and (5) the implementation of the support plan results in further listening, learning, and adaptation as the needs of the person change of time. The use of a person-centred planning approach may assist practitioners to protect and uphold the rights of PWD by providing a forum for the person and their family to make decisions about how they wish to be supported and play a central role in the behaviour support planning process. Such an approach emphasises the importance of self-determination, choice, and autonomy for PWD, and transforms the behaviour support process from one where people with disabilities are passive recipients of care to one in which they are active participants in their own services and supports (Ratti et al., 2016). Using a person-centred planning approach may help PWD access habilitative supports that are based on an understanding of their strengths and needs and are designed to support participation and inclusion in the community (Article 26).

Take a Holistic Approach when Supporting the Person

The CPRD states that PWD have a right to be included in the community (Article 19), education (Article 24), healthcare (Article 25), work and employment (Article 27), and an adequate standard of living and social protection (Article 28). Adopting a holistic approach provides support to develop and enrich the whole person, taking into account their educational, vocational, social, recreational emotional, physical, and even spiritual wellbeing (New South Wales Government, 2014). Within Bronfenbrenner’s Ecological Systems Theory, the notion of the environment becomes fundamental to development and to the safeguarding of human rights. Jorgensen et al. (2023) suggest that, for PWD, challenging behaviours might be better understood as adaptive responses to maladaptive environments. Therefore, viewing behaviour through the lens of a social-ecological perspective may help practitioners address wider systemic issues that impact PWD as part of the provision of behaviour support services. The social-ecological model might help guide practitioners to ensure that PWD have equal access to services, education, and employment opportunities, among other things. Improving accessibility includes not just physical modifications to buildings, transportation, and public spaces, but also includes addressing attitudinal and communication barriers that may prevent people with disability from being included and participating in all aspects of social, educational, recreational, and political life (World Health Organization, 2011).

PBS-based services therefore should be flexible and subject to constant review, since environments alter as people develop (New South Wales Government, 2014). Additionally, this holistic approach should fundamentally acknowledge the needs and agency of the supported individual by honouring their experiences and perceptions (Cox et al., 2021). The holistic approach can be facilitated through collective, collaborative initiatives among all stakeholders who support the PWD, allowing for the effective construction of an appropriately nurturing and supportive environment (Garcia-Melgar et al., 2022). In this context, environmental support is cognisant of the complete person and encapsulates their judicial, legal, marital, social, academic, and psychological rights (Australian Government, 2021). This holistic approach is mindful of the person being supported, and support begins with their fundamental needs. These fundamental needs uphold the inherent dignity of each individual and are not minimised by the person’s disability, offering fuller, and more sensitive support.

Teach and Tell Others about Human Rights

To ensure that the results of PWD are protected and upheld in service delivery, practitioners have a responsibility to raise awareness about the rights of PWD (see Article 8). Today, PWD are at significant risk of experiencing treatment that conflicts with their human rights. For example, researchers have found that PWD are at higher risk of experiencing exploitation, violence, abuse, and mistreatment (Koh et al., 2021). PWD who display challenging behaviour may be subjected to restrictive practices which, if misused or overused, may conflict with their rights (Chan, 2016). Finally, PWD may not have accessible information about their human rights and may not be able to speak up when their rights are violated (Didi et al., 2018; Koh et al., 2021; Tarulli et al., 2004). Therefore, a “Swiss cheese” approach to teaching and telling others about the rights of PWD is needed. The Swiss cheese approach has become a paradigm for addressing risk and enhancing quality and safety in a range of settings (Wiegmann et al., 2022). It is based on the notion that there are always holes in quality and safeguarding procedures, but that by layering interventions to promote safeguarding, risks can be more effectively mitigated (similar to stacking slices of Swiss cheese on top of each other).

Practitioners might use the Swiss cheese model to layer approaches for (1) educating others about the human rights of PWD and (2) identifying and responding to potential human rights violations. First, practitioners should encourage service provider organisations to develop organisational policies and procedures that describe how the rights of PWD will be protected and upheld in all aspects of service delivery. These policies should be made publicly available on service provider websites and provided to all service recipients. Secondly, organisational policies that describe how rights will be protected and upheld should be communicated to service recipients and staff in several accessible formats, including easy-read formats. An example of an easy-read version of the RIGHT-based model of PBS proposed in this study is provided in a table included in the supplementary materials. Third, all staff should receive induction and ongoing training on the human rights of PWD, and discussions about human rights should be a regular part of staff meetings and supervision sessions. Such training should include an overview of practical recommendations for upholding the rights of PWD in practice. Fourth, staff and service recipients should be provided with easy-to-navigate processes for reporting potential human rights violations and should be encouraged to report. Finally, service providers should consider establishing human rights committees to discuss ways to further protect and uphold the rights of service recipients, ways to further educate others about the rights of PWD, and ways to address wider systems and structures that contribute to the exclusion and marginalisation of PWD. Such committees might consist of organisational leaders, people with lived experience of disability, family members of PWD, support workers, researchers, and/or community members with an interest in supporting PWD to experience and enjoy their rights in all aspects of life. Teaching and telling others about the rights of PWD may allow practitioners to systematically address attitudinal barriers faced by PWD and in turn open new avenues for PWD to experience self-determination, choice, and autonomy.

Support the Person to Achieve Their Goals and Live a Good Life

Supporting PWD to achieve their goals and live a satisfactory life is a complex task that requires a multi-faceted approach. To achieve this end, there is a need to ensure that PBS-based services consider the strengths, values, preferences, and needs of PWD (see Article 26). We recommend that two related concepts drive practitioners’ work to achieve these ends: social validity and quality of life. The concept of social validity focuses on three key elements of support: (1) the development of goals that are of social significance, (2) the use of procedures (e.g. supports, teaching, interventions, etc.) that are socially acceptable, and (3) the social importance of the outcomes (Carter & Wheeler, 2019; Wolf, 1978). In this model, the person with disabilities decides what a good life looks like for them. As mentioned above, developing a therapeutic alliance with the person and their support team and working in partnership with the person and their support team to identify goals and develop behaviour support plans, using a person-centred planning approach, may help ensure that socially valid support is provided. However, including recipients of behaviour support in the social validation process must go beyond providing them with periodic input into the development of their support plan. Rather, it must be an ongoing process that involves regular discussion with the person and their family about the satisfaction with the support provided and ongoing data collection and data analysis to monitor whether the implementation of behaviour support strategies result in meaningful and valued outcomes for the person. A socially valid approach to behaviour support is also responsive to the person’s needs; in other words, the behaviour support plan is viewed as a flexible and evolving document that changes often as the needs and preferences of the person change.

There is also a need for practitioners to consider how the provision of PBS-based services enhances quality of life outcomes for the person. Quality of life (QoL) is a complex construct defined by the World Health Organization (1995) as “an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns” (p. 1403). Several authors have argued that the concept of quality of life might be a useful framework for advancing the rights of PWD (Lombardi et al., 2019; Verdugo et al., 2012). Lombardi et al. (2019) described a conceptual model of QoL that included eight core domains: emotional wellbeing, physical wellbeing, material wellbeing, self-determination, personal development, interpersonal relations, social inclusion, and rights. The authors then conducted a Delphi study to first determine how QoL domains are directly related to specific articles in the CRPD. For example, personal development was viewed by participants to be related to Article 24 of the CRPD, Education, whereas social inclusion was viewed to be related to Article 8, Awareness Raising, Article 9, Accessibility, and Article 18, Liberty of Movement and Nationality, among others. Participants then established consensus on several potential measurable indicators related to QoL that might be used in organisations and systems to determine if and how the rights of PWD are protected and upheld. For example, participants determined that the degree to which Article 24, Education, is enacted in practice to facilitate the personal development of PWD might be measured by assessing the personal skills of the person, the educational setting of the person, and the degree to which PWD are provided with opportunities for lifelong learning. Alternatively, the degree to which Article 8, Awareness Raising, is enacted in practice to facilitate the social inclusion of people with disabilities might be measured by assessing the frequency and type of acts of awareness (e.g. projects and campaigns) designed to increase social inclusion. Although this study was not specific to the provision of PBS to PWD who display behaviours of concerns, QoL has been identified as a core component of PBS. Therefore, the QoL framework and corresponding measurable indicators described by Lombardi et al. may be a useful starting point for behaviour support practitioners who wish to align their professional practice with the human rights model of disability.

Limitations and Future Directions

The current study provides an initial exploration of the strategies used by Australian behaviour support practitioners to protect and uphold the human rights of the individuals they serve. Results add to a growing body of international research discussing ways to ensure the rights of PWD who display challenging behaviour are upheld during the provision of behaviour support, an important but under researched area. However, the results must be considered preliminary at this time, and limitations must be noted. A single sample of purposefully sampled 98 practitioners responded to one open-ended question about the strategies they use to protect and uphold human rights. Therefore, the findings of the currently study cannot be generalised to the wider workforce, and additional approaches (e.g. additional survey questions, interviews, or focus groups) are needed to further identify ways that practitioners currently or could potentially deliver behaviour support services using a human rights framework. Additionally, although the current study provided an analysis of the perspectives of a group of practitioners, we did not directly observe practitioners to determine how the strategies they described were implemented in their professional practice. Future research should explore how strategies to protect and uphold the rights of PWD are enacted in organisational policies and practices. This might be accomplished by conducting case studies with individual service provider organisations and behaviour support practitioners to describe how information about human rights is incorporated in staff training and supervision activities, person-centred planning activities, organisational policies and procedures, and resources provided to PWD and their families. Such case studies might highlight examples of good practice that could be shared with other practitioners and providers via practice briefs or training resources. In addition, future research might extend the methods used in the current study to explore the factors that make it challenging for practitioners to protect and uphold the rights of the people they serve (barriers) and, conversely, the factors that help them protect and uphold client rights (enablers).

Secondly, the current study did not include the perspectives of PWD and their families. The development of strategies for protecting and upholding the rights of PWD during the provision of behaviour support services should also include their voices. However, participating in research may be difficult for PWD when research methods are inaccessible (Browne & Dorris, 2022). Thus, it will be important for researchers to identify and use rights-based approaches for facilitating research participation, including co-designing new research about rights with PWD. Future research could employ a variety of accessible and inclusive research methods to capture the voices and perspectives of PWD about ways to better uphold their rights; for instance, researchers might elicit different written and verbal responses from PWD, use assistive technology or photo-voice methods, provide PWD with accommodations to participate (such as more time and flexible scheduling arrangements), or invite the PWD to participate with the support of a trusted friend or family member. The findings of such research may complement and extend the results of the current study and provide a more complete understanding about ways to uphold the rights of PWD in practice. Such findings could be used to inform policy and practice guidelines that describe ways for behaviour support practitioners and others who provide behaviour support services to protect and uphold the rights of the people they serve.