A positive behaviour support practice framework for disability and community services in Australia that prioritises human rights and evidence-based practices.

Purpose: This paper introduces a practice framework for individualised positive behaviour support (PBS). The framework incorporates existing function-based PBS principles and integrates contemporary research and Australian legislation to frame practice elements through a human rights lens. It is designed to support people with disability of varied aetiologies across the lifespan in various settings (e.

How does the subjective well-being of Australian adults with a congenital corpus callosum disorder compare with that of the general Australian population?

Purpose: Very little is known about the subjective well-being (SWB) of adults with a congenital corpus callosum disorder (CCD), the extent to which they feel satisfied with their lives, and what might be helpful in improving their SWB and quality of life. This study measured SWB among Australian adults with a CCD and compared the results with normative data for the wider Australian adult population.

Methods: Online surveys were completed independently by 53 Australian adults with a CCD.

Identifying priorities for Australian disability research using Q methodology.

Background: Globally, there are over an estimated one billion people with disability. Research priorities with a focus on diagnosis and treatment of conditions or policy and service initiatives, traditionally decided by researchers, may not align with priorities of those with lived experience of disability.

Objective: To explore and inform disability research for Australia, including perspectives of people with disability.

Mapping the parent experience of echolalia in autism spectrum disorder onto a conceptual taxonomy.

Purpose: Echolalia, the repetition of previously heard speech, is prevalent in a variety of neurologic and psychiatric disorders. Within the context of echolalia in autism spectrum disorder (ASD), research and intervention historically assume a clinical standpoint with two opposing paradigms: behaviourism and developmentalism. The literature is largely silent on how those other than researchers and clinicians understand echolalia.

'Let me tell you, I see echolalia as being a part of my son's identity': Exploring echolalia as an expression of neurodiversity from a parental perspective.

Echolalia is a commonly found speech and language condition in autistic children. Children with echolalia repeat words and phrases they previously hear in place of proving a non-repetitive response. In research and when visiting speech and language services, one of the common goals is to modify these repetitions so that these children may, more socially, engage with their surrounding environment.

Late effects of polio: Interviewing general practitioners and health professionals about the need for and the means of promoting continuing professional development.

Background And Objectives: Polio Australia estimates tens of thousands of polio survivors are experiencing late effects of polio (LEoP), including increased cases among young women of childbearing age in some migrant communities. Because polio has been declared eradicated in Australia, the provision and uptake of education by general practitioners (GPs) and healthcare professionals (HCPs) is minimal. We explored the awareness of LEoP among HCPs and ways to enhance knowledge dissemination to improve clinical practice.

Assistance Dogs for People with Younger (Early)-Onset Dementia: The Family Carer's Experience.

There is growing evidence for trained assistance dogs promoting the health, wellbeing, and quality of life of people in a variety of circumstances, including for those with dementia. Little is known about people with younger (early)-onset dementia (YOD) and family carers. As part of a larger study involving 14 people with YOD matched with trained assistance dogs over a two-year period, we report analyses of interviews with 10 family carers conducted on multiple occasions investigating their experience with an assistance dog.

Echolalia as defined by parent communication partners.

Backgrounds And Aims: Echolalia, the repetition of previous speech, is highly prevalent in Autism. Research into echolalia has historically assumed a clinical standpoint, with two opposing paradigms, behaviourism and developmentalism, offering differing support and intervention programs. These paradigms offer a multitude of clinical operationalised definitions; despite attempts, there continue to be challenges regarding how echolalia is to be defined.

Realising economic and social rights for children with communication and swallowing disability: Sustainable Development Goals 1, 8 and 10.

Purpose: This commentary describes the economic disempowerment of children with communication and/or swallowing disability and outlines why attending to their economic and social needs is essential for the realisation of the United Nations' Agenda 2030.

Result: Children with communication and/or swallowing disability encounter intersectional disempowerment on account of both their disability, and their status as children. In particular, they experience unique barriers to the realisation of their economic and social rights.

Repeating purposefully: Empowering educators with functional communication models of echolalia in Autism.

Background And Aims: Echolalia, the repetition of speech, is highly prevalent in school aged children with Autism. Prior research has found that individuals with echolalia use their repetitions to engage in communicatively functional speech, in the absence of self-generated speech. Educators are the natural audience for a wide vary of echoed utterances across environments and in differing contexts.

Short report: Gendered workplace social interaction processes in autism.

Background: Navigating workplace social interactions can be stressful for autistic people and be experienced differently by gender. A better understanding of the autistic experience of these difficulties is needed to inform effective policy, practice, and individualized support.

Method: Fifty-five autistic individuals (n women=32; n men=22) participated in either an online survey or focus group.

The Future of Disability Research in Australia: Protocol for a Multiphase Research Agenda-Setting Study.

Background: For people with disabilities to live a good life, it is essential that funded research in health and social care addresses their interests, meets their needs, and fills gaps in our understanding of the impact that services, systems, and policies may have on them. Decisions about research funding should be based on an understanding of the research priorities of people with disabilities, their supporters and allies, disability researchers, service providers, and policy makers working in the field.

Objective: The aim of this protocol is to describe the research design and methods of a large-scale, disability research agenda-setting exercise conducted in 2021 in Australia.

Trained assistance dogs for people with dementia: a systematic review.

This systematic review investigated evidence for the effectiveness of trained assistance dogs as an intervention and support for people with dementia. Peer-reviewed articles were retrieved from multiple databases (SCOPUS, Web of Science, and Google Scholar). Reference lists of the articles retrieved were also screened to identify key authors for inclusion.

"I Would Love to Just Be Myself": What Autistic Women Want at Work.

Background: Autistic individuals experience barriers obtaining and sustaining employment. In the general population, gender also impacts labor market experiences. Understanding the occupational aspirations and expectations of individuals disaggregated by autism diagnosis and gender may assist the development of tailored workplace policies and support strategies.

Challenges for females with high functioning autism in the workplace: a systematic review.

Purpose: Individuals with High Functioning Autism (HFA) experience high levels of underemployment and unemployment, resulting in negative economic, social, and health outcomes. Given what is known about labor market participation difficulties experienced by women generally, and the paucity of research concerning women with HFA, this systematic review synthesized what is known about the labor market experiences of women with HFA.

Method: A systematic review of the literature concerning adult females with HFA in relation to the workplace yielded 1947 results; 11 met inclusion criteria being based on original data, but not necessarily focusing solely on women.

Examples of individual supported living for adults with intellectual disability.

Background: This article provides a qualitative account of four models of support for adults with intellectual disability in individual supported living (ISL) arrangements.

Materials And Methods: Completion of the first 50 evaluations of 150 arrangements for the third phase of the ISL project provided the examples.

Results: Four approaches are described: living alone, co-residency, relationship and host family.

Initiatives to reduce the use of seclusion and restraints on people with developmental disabilities: a systematic review and quantitative synthesis.

Contrary to the expectations articulated in public policy, restrictive interventions are commonly used in support services for people with developmental disabilities. This systematic review and quantitative synthesis was undertaken to investigate whether the use of seclusion and restraints on people with developmental disabilities can be reduced. Searches of the Academic Search Complete, CINAHL, MEDLINE, and PsycINFO electronic databases returned 7226 records, of which 11 met the inclusion criteria for this review.

Interacting with adults with congenital deafblindness: The experiences of disability support workers.

Background: This study aimed to gain greater insight into the perspectives of staff on their interactions with adults with congenital deafblindness in light of the research literature reporting these interactions to be lacking in quality and quantity.

Method: Data from interviews with 8 disability support workers were analysed using the approach described by Charmaz (2006).

Results: Three key themes emerged from the interview data, which support and elaborate on findings of previous studies.

A preliminary investigation of the utility of the "Behavior Support Plan Quality Evaluation Guide II" for use in Australia.

Background: The quality of behaviour support plans (BSPs) can be an important influence on the quality of the support provided to people with disability who show challenging behaviours. The Behavior Support Plan Quality Evaluation Guide II (BSP-QE II) is one tool that may be useful in assessing the quality of behaviour support plans. It has previously been used to assess BSPs to support children in schools in the USA.

Observing the behaviour and interactions of adults with congenital deafblindness living in community residences.

Background: Adults with congenital deafblindness (CDB) have received little attention from researchers. In this study we examined the nature of interactions between adults with CDB and the staff who mediate their support, and investigated the reliability of an observation coding system, originally designed for observing adults with severe intellectual disability.

Method: The behaviours of 9 adults with CDB, including their interactions with support staff from 2 community residences, were recorded and subsequently coded by 2 observers.

Service and support needs of Australian carers supporting a family member with disability at home.

Background: As part of an international, multicentre project, the service and support needs of Australian family carers were investigated.

Method: A sample of 1,390, 448 family carers completed a self-report survey, including an adaptation of the Family Needs Survey (FNS) and several open-ended questions. A mixed method design was used, employing quantitative and qualitative analyses.

Staff behaviour and resident engagement before and after active support training.

Background: Identifying the factors associated with greater increases in resident engagement has the potential to enhance the effectiveness of active support (AS).

Method: Observational data from Stancliffe, Harman, Toogood, and McVilly's (2007) study of AS were analysed to evaluate amount of staff help, effectiveness of staff help, and staff use of praise.

Results: Lag analyses showed that antecedent staff help was consistently followed by resident engagement at pre-test.