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

Diagnostic genetic testing and non‐invasive prenatal testing (NIPT) for conditions associated with disability are becoming increasingly available to consumers. This genetic information can be used in the disability setting to inform factors such as prognosis, management, and reproductive decision‐making. Genetic counselors (GCs) play an important role in the provision of genetic testing and NIPT, and their attitudes toward disability can influence how genetic information is communicated and shape patients' responses. This study aimed to evaluate and describe Australasian GCs' experience with and attitudes toward disabilities to identify potential biases and training needs. A cross‐sectional survey was distributed to 400 GCs registered with the Human Genetics Society of Australasia. Of the 106 respondents (participation rate: 26%), a significantly greater proportion were more comfortable interacting with individuals with physical disability as compared to intellectual disability (p < 0.001). GCs with personal experiences with disabilities reported significantly greater comfort interacting with people with intellectual disability than those without experience (p = 0.012). Qualitative analysis revealed discomfort was less reflective of bias than inexperience and apprehension about communicating disrespectfully. GCs believed people with disabilities experience discrimination and that having a disability could make a person stronger, wiser, and more motivated. Most GCs viewed prenatal testing for disabilities positively as it allowed for decisions regarding continuing the pregnancy and/or provided opportunity to prepare. Challenges identified for prenatal counseling included negative societal attitudes and the low visibility of disability. GCs felt that 'personal beliefs' was the primary factor influencing the decision to terminate a pregnancy affected by disability. These findings highlight important education and training needs for GCs to improve preparedness and comfort when communicating with people with a disability. [ABSTRACT FROM AUTHOR]

A high proportion of adults with intellectual disability (ID) who live in supported accommodation (i.e. group homes) engage in challenging behaviours (CB). A lack of engagement in meaningful activity, social isolation, communication difficulties, and boredom can be triggers for challenging behaviour. There is a small body of literature on staff/resident interactions in the context of challenging behaviour but even less research has addressed resident-to-resident interactions. Specific Aims: This study aims to examine the types of interactions in which residents of shared accommodation settings engage, with whom; and explore staff's understanding of residents' needs, communication abilities, and relationships. Method: Observations of interactions with 12 residents who were identified as having challenging behaviours were conducted using momentary time sampling. Direct care staff who supported the residents were also interviewed. Findings: Residents were infrequently engaged in activity or interactions and where these did occur, they were primarily with staff rather than with co-residents. Discussion: Staff play an important role in supporting and facilitating people with ID and CB to expand their social interactions and engagement in meaningful activity, which can have a significant impact on the occurrences of challenging behaviour. The implications for practice in shared accommodation sites are discussed.

Background: Research shows that up to 43% of disability support workers (DSWs) report poor psychosocial work outcomes (e.g., stress, job burnout, low job satisfaction). This study examined whether the job demand-control-(support) model offers a valid explanation of DSW burnout and work engagement. Method: 325 DSWs completed online measures of burnout, work engagement, workload, job control, and supervisor or colleague support. Results: Significant three-way interactions between workload, control and colleague support were found for emotional exhaustion and personal accomplishment (burnout), and vigour (work engagement). High workload, low job control and low colleague support was related to higher burnout and lower work engagement, and high colleague support or job control reduced the impact of workload on these outcomes. Conclusions: Given the promising findings in relation to the job demand-control-(support) model, organisations looking to enhance DSW wellbeing in the workplace should address issues around job control, workload and support in combination as opposed to separately.

Background: Quality behaviour support plans (BSPs) are critical for achieving positive outcomes for people with intellectual disability who exhibit challenging behaviour. This study measured the quality of BSPs for technical accuracy and appropriate readability. Method: Ten disability support organisations provided 139 BSPs for evaluation using the Behavior Support Plan Quality Evaluation (BSP-QE II; to assess technical accuracy) and Flesch readability scores (to assess readability). Results: The mean BSP-QE II score (M = 6.53) classified the BSPs analysed as "weak." Of interest, the elements of the BSPs that were subject to specific statutory regulation displayed greater quality. The readability scores indicated that plans were written using language that may not be understandable to typical direct support staff. Conclusions: Poor quality BSPs, or those too complex to be readily understood, may not be implemented fully. Statutory regulation positively influences BSP quality; however, a more detailed focus on training and quality assurance is indicated.

Background: Informed policy and service provision often relies on a sound statistical picture of a population and its geographical dispersion. Such a picture does not presently exist for Indigenous Australians with intellectual disability (ID) and co-occurring challenging behaviour (CB). Method: Population statistics for 18- to 64-year-old Australians were sourced from the 2008 National Aboriginal and Torres Strait Islander Social Survey and 2007-2008 National Health Survey. CB was not directly counted; however, it has been linked to higher severity of intellectual impairment. Results: National prevalence of ID for Indigenous adults was 7.6% and 2.5% for non-Indigenous. ID with profound or severe core activity limitation was 2.1% for Indigenous adults and 0.8% for non-Indigenous. Conclusion: Population statistics afforded a broad picture of ID and severity of intellectual impairment. Policy and service provision for Indigenous peoples will likely benefit from methodologies that supplement population statistics and provide greater understanding of group dispersion.

Previous research has highlighted that factors such as large workload, role ambiguity, lack of support from colleagues, and challenging behaviour are associated with higher levels of burnout within the disability support worker (DSW) population. The aim of this research was to investigate which factors contribute the most to the prediction of the three facets of burnout--feeling exhausted and overextended by one's work (emotional exhaustion), detached and callous responses towards work (depersonalisation) and a lack of achievement and productivity within one's role (personal accomplishment). The factors chosen for analysis within this research were analysed within four categories linked to theories of burnout development ("individual," "interpersonal," "organisational" and "demographic"). A sample of 108 DSWs completed a questionnaire booklet that contained standardised measures of burnout and job stressors related to disability work. Results highlighted the importance of predictors such as challenging behaviour (interpersonal), workload (individual), supervisor support (individual), work-home conflict (individual), job feedback (individual), role ambiguity (organisational), low job status (organisational), role conflict (organisational), gender (demographic) and work hours (demographic) when predicting one or more of the facets of burnout. In conclusion, disability services and organisations may benefit from focusing on remodelling their staff-related organisational practices in order to prevent the development of burnout in their DSWs (e.g., increase supervision and support practices). (Contains 7 tables.)

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

People with intellectual and developmental disability (IDD) are a vulnerable population in all aspects of access and participation, abuse and neglect, and being subject to the use of restrictive practices. Accordingly, they are a group whose human rights can be impacted where equal access to supports, services, and accessible information is compromised. The current COVID‐19 pandemic is a global humanitarian emergency that has had a devastating impact across the world, for all people. Growing concern has been raised about the impact of the COVID‐19 virus on the health of people with disabilities and there has been subsequent development of strategies and protocols to promote equal access to information, health supports, and services. People with IDD have high levels of underlying comorbidity that increases their risk of contracting COVID‐19 and measures to protect them from infection are critically important. However, those measures may trigger behaviors of concern and increase the risk of being subjected to restrictive practices. While some attention has been paid to the health impacts of COVID‐19 on people with disabilities, there has been less paid to the impact on the human rights of people with IDD who present with behaviors of concern. The aim of this paper is to provide a hypothetical exploration of the impacts of pandemic prevention measures on people with IDD and behaviors of concern in the context of the Convention on the Rights of Persons with Disabilities (CRPD). In the absence of available guidance for working with people with IDD with behaviors of concern during COVID‐19, we suggest behavior support response plans that aim to ensure that people with IDD with behaviors of concern are supported properly in a time of significant disruption for them, thereby safeguarding their human rights. [ABSTRACT FROM AUTHOR]

A high proportion of adults with intellectual disability (ID) who live in supported accommodation (i.e. group homes) engage in challenging behaviours (CB). A lack of engagement in meaningful activity, social isolation, communication difficulties, and boredom can be triggers for challenging behaviour. There is a small body of literature on staff/resident interactions in the context of challenging behaviour but even less research has addressed resident-to-resident interactions. Specific Aims: This study aims to examine the types of interactions in which residents of shared accommodation settings engage, with whom; and explore staff's understanding of residents' needs, communication abilities, and relationships. Method Observations of interactions with 12 residents who were identified as having challenging behaviours were conducted using momentary time sampling. Direct care staff who supported the residents were also interviewed. Findings: Residents were infrequently engaged in activity or interactions and where these did occur, they were primarily with staff rather than with co-residents. Discussion: Staff play an important role in supporting and facilitating people with ID and CB to expand their social interactions and engagement in meaningful activity, which can have a significant impact on the occurrences of challenging behaviour. The implications for practice in shared accommodation sites are discussed. [ABSTRACT FROM AUTHOR]

Background Research shows that up to 43% of disability support workers (DSWs) report poor psychosocial work outcomes (e.g., stress, job burnout, low job satisfaction). This study examined whether the job demand-control-(support) model offers a valid explanation of DSW burnout and work engagement. Method 325 DSWs completed online measures of burnout, work engagement, workload, job control, and supervisor or colleague support. Results Significant three-way interactions between workload, control and colleague support were found for emotional exhaustion and personal accomplishment (burnout), and vigour (work engagement). High workload, low job control and low colleague support was related to higher burnout and lower work engagement, and high colleague support or job control reduced the impact of workload on these outcomes. Conclusions Given the promising findings in relation to the job demand-control-(support) model, organisations looking to enhance DSW wellbeing in the workplace should address issues around job control, workload and support in combination as opposed to separately. [ABSTRACT FROM AUTHOR]

Within the healthcare service sector across many Western countries, clinical governance frameworks have been adopted to ensure consistent and effective service provision. There is merit in adopting such frameworks within disability service organizations as a mechanism to enhance service quality. This study explored whether disability service organizations exhibit organizational climates conducive to supporting clinical governance from the perspective of allied health professionals (AHPs). A total of 88 AHPs completed the Clinical Governance Climate Questionnaire via an online questionnaire. AHPs reported that planned quality improvement initiatives tend to be crisis‐driven within their organizations, with immediate and pressing work pressures taking precedence. AHPs also report that clinical risk data are routinely collected within their organizations, with a lack of consensus around how this information is used to improve practice. In addition, dedicated time for professional development was not available to many of the AHPs, and many reported the presence of hierarchies. Correlation analyses implied that planned quality improvement initiatives appear to be the lynchpin to ensuring quality service provision within disability service organizations. Further research into the organizational climate issues identified in this study is needed—from the perspective of all staff working within disability service organizations—in an effort to inform the development of strategies to effectively implement clinical governance in disability services. [ABSTRACT FROM AUTHOR]

Background Quality behaviour support plans (BSPs) are critical for achieving positive outcomes for people with intellectual disability who exhibit challenging behaviour. This study measured the quality of BSPs for technical accuracy and appropriate readability.Method Ten disability support organisations provided 139 BSPs for evaluation using the Behavior Support Plan Quality Evaluation (BSP-QE II; to assess technical accuracy) and Flesch readability scores (to assess readability).Results The mean BSP-QE II score (M = 6.53) classified the BSPs analysed as “weak.” Of interest, the elements of the BSPs that were subject to specific statutory regulation displayed greater quality. The readability scores indicated that plans were written using language that may not be understandable to typical direct support staff.Conclusions Poor quality BSPs, or those too complex to be readily understood, may not be implemented fully. Statutory regulation positively influences BSP quality; however, a more detailed focus on training and quality assurance is indicated. [ABSTRACT FROM AUTHOR]

Background Informed policy and service provision often relies on a sound statistical picture of a population and its geographical dispersion. Such a picture does not presently exist for Indigenous Australians with intellectual disability (ID) and co-occurring challenging behaviour (CB). Method Population statistics for 18- to 64-year-old Australians were sourced from the 2008 National Aboriginal and Torres Strait Islander Social Survey and 2007–2008 National Health Survey. CB was not directly counted; however, it has been linked to higher severity of intellectual impairment. Results National prevalence of ID for Indigenous adults was 7.6% and 2.5% for non-Indigenous. ID with profound or severe core activity limitation was 2.1% for Indigenous adults and 0.8% for non-Indigenous. Conclusion Population statistics afforded a broad picture of ID and severity of intellectual impairment. Policy and service provision for Indigenous peoples will likely benefit from methodologies that supplement population statistics and provide greater understanding of group dispersion. [ABSTRACT FROM AUTHOR]

Despite the overwhelming research evidence discrediting the validity of Facilitated Communication (FC), Lilienfeld, Marshall, Todd and Shane (2015) have demonstrated that the use of FC is still prevalent in disability service and educational settings. They have comprehensively examined the persistence of FC, provided reasons for its persistence, and formulated key recommendations to address the insidious spread of FC. We concur with Lilienfeld et al. as depressing as it may be, particularly regarding the continued use of FC by clinicians, educators and researchers. Drawing upon our experience as practitioners in the field of intellectual and developmental disability, we offer the view that it is important to argue against FC from a human rights perspective using the United NationsConvention on the Rights of Persons with Disabilities(2006). Put simply, FC is an abuse of human rights. [ABSTRACT FROM PUBLISHER]

A family having to relinquish the care of their family member with a disability is a situation that is often dealt with by disability services. In precipitous situations, the relinquished individual usually is placed in respite care until suitable permanent accommodation is organized or he or she is able to return to the family home. To examine to what extent the literature has discussed the issues associated with the need for urgent respite and how this need may link to relinquishment of care, the authors undertook an extensive review of relinquishment of care. The literature indicated that many families and carers feel that their respite needs are not being met and that certain individual and family characteristics are associated with need for urgent respite (such as severe disability, poor support, and carer distress). The dearth of studies on relinquishment of care makes it difficult to draw clear, validated statements from the literature about this issue. However, extrapolation from the literature on respite and relinquishment involving other client groups' points toward increased requests for respite being an early warning sign for relinquishment. The literature also notes that challenging behaviors, poor coping and lack of support, dire financial concerns, and carer distress are factors that often lead to relinquishment. The literature also notes that interventions such as active support and cognitive behavioral therapy can support families who are considering relinquishment or have relinquished care. The authors conclude that trends reported with regard to respite inadequacies reinforce the belief that for families and carers to receive maximal benefit from using respite, their respite allocation must be regular and planned in accordance to their needs. Overall, empirically based information regarding relinquishment of care involving people with intellectual disabilities is limited; hence, increased research on this issue is needed to expand the current knowledge base and the identification of strategies to more effectively support families. [ABSTRACT FROM AUTHOR]