Editorial for the special issue: ‘positive behaviour support: moving toward a human rights based model of support’

We are pleased to be able to present a special issue of the International Journal of Developmental Disabilities on how Positive Behaviour Support (PBS) might help people with disabilities and their families understand and experience their rights, experience greater levels of social inclusion, and benefit from overall improved quality of life. The development of a range of person-centred and rights-based approaches for supporting people with intellectual and developmental disabilities (IDD) is important for several reasons. Historically, people with IDD have been removed from their families and placed in congregate care or institutional settings, limiting their opportunities for choice and community presence, inclusion, and participation (Burrell and Trip, 2011). Individuals with IDD are at heightened risk for discrimination, exploitation, abuse, and neglect, often due to their difficulties communicating their preferences, wants, and needs or reporting the incidence of abuse (Didi et al., 2018). Some individuals with IDD who display behaviours of concern may be at increased risk of experiencing exclusion and restrictive practices, such as physical, chemical, mechanical, or environmental restraint (Friedman and Crabb, 2018). Finally, Didi et al. (2018) argued that families, mainstream service providers, and disability support workers often struggle to consistently accommodate or effectively respond to the needs of people with IDD. As a result, upholding the human rights of people with IDD remains a significant area of concern.

In 2006, the Convention on the Rights of Persons with Disabilities (CRPD) was drafted by the United Nations (UN) to identify the rights of people with disability as well as the obligations of countries to protect and uphold those rights. The CRPD was significant as it was the first to articulate the needs and concerns of people with disabilities about their human rights in a single international treaty (Didi et al, 2018). At present, 164 countries have signed and 185 countries have ratified the CRPD. In doing so, countries 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 (Small, 2007), including education, employment, healthcare, and justice.

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 individuals achieve enhanced community presence, choice, personal competence, respect, and community participation (Kincaid et al., 2016). It has been stated that PBS is an approach that integrates the scientific framework of applied behaviour analysis with the values and rights of people with disabilities and thus may be a useful approach for promoting and upholding the rights of people with disabilities (Carr et al. 2002, Chan et al. 2011). Historically, PBS has been defined as an application, an applied science, a collection of procedures, a technology, a process of assessment and intervention, an approach, or a framework (Carr et al., 2002, Horner et al., 1990, Sugai et al., 2009). In 2016, Kincaid and colleagues proposed an updated and unified definition of PBS that reflected its diverse application across a range of 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 aim to enhance the person’s wellbeing and quality of life. In addition, the definition recognises the need for PBS to address larger systems issues that prevent people with disabilities from experiencing inclusion, participation, and community presence. As such, the current definition of PBS might be considered consistent with the 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 and Beckett, 2021). Today, communication, education, healthcare, recreation, and employment are considered to be fundamental human rights for all, and integral to a fair and just society. However, people with disabilities still struggle to access appropriate communication, education, healthcare, recreation, and employment. Given these challenges, we consider it important for researchers and practitioners to further explore how PBS might be delivered in ways that are consistent with the human rights model of disability.

In this special issue, we present a collection of papers that describe ways to strengthen the delivery of PBS in school, home, and community-based settings in ways that protect and uphold the rights of the individuals who receive these services and supports. Although access to education is a well-established human right, marginalised groups, such as students with disabilities, are more likely to be excluded from typical educational experiences. McIntosh (2023) describes how the school-wide positive behaviour interventions and supports (PBIS) framework might guide schools to implement systemic changes that lead to more equitable outcomes for all students, including students with disabilities. McIntosh describes an equity centred PBIS approach that ensures students with disabilities have access to supports, representation within systems, and participation in designing and delivering practices. McIntosh provides examples of how equity-centred PBIS may address and reduce ableism and racism in schools and discusses how today’s education systems might be transformed into levers for social justice.

Two reviews included in this special issue explore ways to improve equitable access to PBS as a way to enhance the social inclusion and participation of people with disabilities in schools and community-based settings. Konstantinidou et al. (2023) posited the view that altering staff and service-user behaviour may impact overall on equitable service-provision to individuals with disabilities in care facilities and educational settings. Their review of nine articles, organised into five overarching themes, yielded the view that staff training should occupy a pyramidal approach. The study suggests that skill and knowledge obtained via training should be transferred to multiple caregivers and support staff to ensure better provision of support for those under their care. In doing so, the authors posit that building the capability of caregivers and staff as part of the provision of PBS is a critical component of a human rights based approach.

In another paper, Walker et al. (2023) undertook a scoping review to understand how frequently student voice has been taken into consideration when developing PBIS interventions in schools. The authors were responding to a concern about the lack of involvement of students with extensive support needs in school wide applications of PBIS, despite frequent calls to action for research in this area for last one decade and half. Using a systematic approach, they could identify only 10 studies that have been conducted since 2006. Their review further showed that the key stakeholders had varied perceptions in terms of value they place in considering perspectives of students. They further suggest that attitudinal barriers and misconception on behalf of the school educators may influence their actions. The authors present several useful implications for supporting the inclusion of students with high support needs in School-wide Positive Behavioral Interventions and Supports (SWPBIS), a population whose voices and needs have historically been absent from school based PBIS research.

Three empirical studies demonstrate considerations for delivering PBS-based services in ways that might uphold the human rights of people with disabilities. Paanenen et al. (2023) explored the provision of the Check-in/Check-out (CICO) support for students within a three-tiered PBIS framework implemented to support inclusive educational practice within Finnish schools. Paanenen and colleagues note the importance of implementing the PBIS framework within Finnish schools to support the effective inclusion of all learners and provide the first detailed exploration of CICO implementation within the Finnish context. The authors examined which students have received CICO supports, as well as whether these supports had been provided as early intervention to address behavioural concerns or whether they were provided to students who have already been identified as having special educational needs or disabilities. Paanenen and colleagues also assessed school personnel’s perceptions of the feasibility and effectiveness of CICO, and the degree to which these ratings varied according to student characteristics. Through this exploration, the authors contribute to the emerging body of research exploring the implementation and effectiveness of Tier-2 interventions within the PBIS framework as a way to support the inclusion and participation of students who may not fully benefit from classwide interventions and supports.

Gover et al. (2023) describe how person-centred and rights-based approaches might be incorporated into the treatment of paediatric feeding challenges. It is noted that feeding challenges can affect an estimated 70% of people with disabilities, and there is a need to identify and evaluate positive and effective interventions that do not include the use of restrictive practices. Gover et al. evaluated a comprehensive, function-based intervention package for addressing feeding challenges displayed by three children with developmental disabilities who displayed selective eating that was not caused by underlying medical conditions. The package included collaboration with caregivers, identification of food preferences, a brief functional behaviour assessment to identify the sensitivity of food selectivity to environmental variables, function-based intervention strategies that included opportunities for the child to make choices and experience reinforcement, and providing the child with continuous opportunities to opt out of the intervention. The intervention was effective for increasing novel food consumption for all three children. This study was unique in that it embedded choice making opportunities throughout the intervention, ensuring the children could be active participants in their own intervention and express their preferences throughout.

Leif et al. (2023) conducted a survey with Australian behaviour support practitioners to identify the barriers that practitioners face when attempting to reduce and eliminate the use of restrictive practices as part of the provision of PBS to people with disabilities who display challenging behaviour. Restrictive practices, such as physical, chemical, and mechanical restraint can restrict access to a person’s autonomy and freedom, pose risks to the safety and wellbeing of the person, and directly conflict with the human rights of people with disabilities. Leif et al. found that Australian behaviour support practitioners often experienced barriers when attempting to reduce and eliminate the use of restrictive practices, such as reluctance on part of stakeholders, difficulties implementing PBS, a lack of data on the use of restrictive practices, and challenges communicating and collaborating with other team members. However, practitioners reported that access to adequate time and funding to support the delivery of training to families and other professionals in the use of PBS enabled them to reduce the use of restrictive practices. Leif et al. provide a set of recommendations for individual practitioners, service provider organisations, and government and regulatory agencies that may facilitate reductions in the use of RPs within the Australian disability sector to further ensure that the rights of people with disability are protected and upheld in all aspects of service provision.

One study included in this special issue explored the relation between ableism and PBIS in school settings. Poed and Fox (2023) conducted a mapping review of behavioural matrices used in public schools across two states in Australia. They were mainly interested in determining if matrices used across Australian schools implementing school-wide PBIS reflected ableist views around student behaviour. The sample of their study identified matrices from a representative sample of schools in the two states of Victoria and Queensland. Their study revealed concerning findings and they report that “structural ableism exists in the way some expected behaviours are framed by requiring a greater response effort from students with disability if they are to meet the standard expected.” Poed and Fox provide useful suggestions for researchers and school professionals for recognising and removing ableism from Tier 1 PBIS practices.

Finally, three discussion papers included in this special issue explore further ways to conceptualise person-centred and rights-based approaches for supporting people with disabilities. Jorgensen et al. (2023) discuss the power of language choices to inform the provision of support to individuals with disabilities who present with challenging behaviours. Their research embraces the view that the environment in which behaviour presents should be examined more closely, affording greater human rights to the individual being supported. The submission, which considers ways to translate the principles of the CRPD into action, supports a movement away from reductively focusing on individual challenging behaviours and instead propose that researchers and practitioners should focus on the identification and remediation of “environments of concern” to better improve outcomes for individuals with disabilities.

Rajaraman et al. (2023) synthesised contemporary literature on choice and self-determination for people with disabilities to present a set of evidence-informed recommendations for incorporating choice making into the provision of PBS services. The authors point out that choice making is a fundamental human right and reflected in the CRPD; thus, teaching choice making and providing choice making opportunities throughout the provision of PBS should be prioritised. However, choice making opportunities may be limited for people with disabilities due to the presumption that people with disabilities, in particular intellectual and developmental disabilities, may lack the ability to make or express their own choices. Rajaraman et al. provide a contemporary definition of choice making, describe ways to facilitate choice making within the provision of PBS, and describe considerations regarding when choice making opportunities should be presented and why practitioners should provide individuals with opportunities to choose whether or not to participate in their own supports and services.

Finally, Breaux and Smith (2023) discuss assent, an emerging but important concept in PBS related to choice making. The authors argue that assent is a human right, but one that is afforded inequitably to people with intellectual and developmental disabilities due to the assumption that they may not be capable of providing and withdrawing their assent. Breaux and Smith first synthesise multiple definitions of assent across disciplines to look for themes and then propose a definition of assent for PBS researchers and practitioners that includes the most commonly occurring components. Secondly, the authors introduce the concept of assent-based intervention, describe its critical features, and discuss how practitioners might define assent and assent withdrawal individually for a person. Finally, recommendations for teaching assent and responding to assent withdrawal during the provision of PBS are provided.

We hope that the papers provided in this special issue encourage researchers and practitioners to consider new ways of supporting people with disabilities that protect and uphold their human rights, and we look forward to reading future research in this area.

Note from the editors

The Editors of the International Journal of Developmental Disabilities (IJDD) would like to thank the guest editors, Erin Leif, Russell Fox, Pearl Subban and Umesh Sharma, for suggesting, organising, editing and reviewing this latest special issue of the IJDD on “Positive Behaviour Support: Moving Toward a Human Rights Based Model of Support’. This special issue focusses on person-centred and rights-based approaches to support people with intellectual and developmental disabilities and the special issue editors have dedicated themselves to make this special issue happen and to include manuscripts from major contributors in this field. The editors of the IJDD would also like to thank each of the individual contributors and authors and independent reviewers for the stimulating papers that are included in this special issue. We are sure that the articles comprising this special issue will encourage researchers and practitioners in their quest to support people with disabilities in ways that protect and uphold their human rights.

Arturo Langa and Brian Salmons

Acknowledgments

We thank the authors who contributed to this special issue and the editors of the International Journal of Developmental Disabilities for providing us with the opportunity to explore the provision of rights-based services and supports to people with disabilities, an important but under researched topic.

Disclosure statement

The authors do not have any conflicts of interest to declare.