Australasian genetic counselors' attitudes toward disability and prenatal testing: Findings from a cross-sectional survey.

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.

'Environments of concern': reframing challenging behaviour within a human rights approach.

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.

Applying the CRPD to People With Intellectual and Developmental Disability With Behaviors of Concern During COVID-19.

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.

Work engagement and job burnout within the disability support worker population.

The aim of this study was to explore work engagement and job burnout within the disability support worker (DSW) population, using the job demands-resources (JD-R) model as a guiding theory. The research measured a set of work-related demands and resources related to working within the disability sector in order to assess which demands/resources account for a significant portion of unique variance when used to model DSW engagement and burnout. This study sampled 258 DSWs from across Australia who completed an online or paper questionnaire that included measures of engagement, burnout and the demands/resources of interest. With regard to demands, role ambiguity was significantly associated with the three engagement scores and the three burnout scores. It also accounted for the most unique variance in the three engagement scores (vigour [VI], dedication [DE] and absorption [AB]), and the personal accomplishment (PA) burnout score. With regard to resources, job feedback was significantly associated with two of the engagement scores (VI and DE) and all three burnout scores. It accounted for the most unique variance in VI and DE, and PA. In conclusion, this research adds to the existing disability workforce literature as it represents one of the first comprehensive investigations of work engagement within this population. Improved job descriptions, on-the-job feedback and the creation of specialist support workers are offered as recommendations to improve the psychosocial health of DSWs.

Investigating the importance of various individual, interpersonal, organisational and demographic variables when predicting job burnout in disability support workers.

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).

Sexuality, pregnancy and midwifery care for women with intellectual disabilities: a pilot study on attitudes of university students.

Women with intellectual disability have historically not been provided the opportunity to become mothers. Attitudes held by future professionals will determine the level and quality of support these women are provided. This study was designed to evaluate and compare the attitudes of students from Education, Disability and Midwifery towards the sexuality and parenting of people with an intellectual disability, and to further examine the attitudes held by Midwifery students following a lecture strategy. A questionnaire assessing attitudes towards the sexuality and parenting of people with intellectual disability was implemented and contained the themes of marriage, parenting, sexual intercourse and sterilization. Significant differences were found between student groups on the themes of sterilization and parenting, with further analysis indicating that Disability students held significantly more positive attitudes than the other two groups. Students reported less positive attitudes towards parenting than marriage, sterilization and sexual intercourse. Respondents' age was significantly associated with their attitudes on parenting, indicating that older students held more conservative attitudes towards the ability of people with an intellectual disability to parent. In addition, this research indicated that the attitudes of Midwifery students became more positive following a lecture delivered after the questionnaire.