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

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 PBSImplementing Recommendations in PracticeRespect 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.