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The temporalities of supported decision-making by people with cognitive disability

WIESEL, Ilan
SMITH, Elizabeth
BIGBY, Christine
THEN, Shih-Ning
DOUGLAS, Jacinta
CARNEY, Terry
2020

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In many societies, people with cognitive disability have been pre- sumed to lack reasoned decision-making capacity. Consequently, substituted decision-making laws and practices have traditionally authorised some people such as parents, guardians or medical professionals, to make decisions on their behalf. Several countries are now moving towards an alternative supported decision-making paradigm whereby people with different cognitive abilities are supported to make decisions that reflect as much as possible their ‘will, preferences and rights’. In this paper we examine how geo- graphical thinking about temporalities might illuminate some of the legal, ethical and practical complexities of supported decision- making. The paper draws on qualitative data from interviews with people with intellectual disabilities or acquired brain injury, and those who support them in making decisions. We examine how temporal scales and boundaries shape the determination of decision-making capacity; how decision-makers’ ‘will and preferences’ are interpreted by supporters; and how the labour of support for decision-making is organised. We argue that further geographical engagement with supported decision-making can help significantly advance this important disability rights agenda.

Work capacity assessments and efforts to achieve a job match for claimants in a social security setting: an international inventory

SENGERS, Johan H
AMBA, Femke I
BROUWER, Sandra
STAHL, Christian
2020

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Purpose: Many high-income countries are witnessing a shift of focus on eligibility for disability benefits towards promotion of work reintegration. However, little is known about how countries assess work cap- acity, and how a job match is then obtained. The current study aims to compare work capacity assess- ments and available efforts to achieve a job match in eight high-income OECD countries.

 

Methods: A survey was conducted among key stakeholders concerning organization of work capacity assessments in social security settings, and efforts made to obtain a job, across eight OECD countries: Australia, Denmark, Finland, Iceland, Sweden, the Netherlands, the United Kingdom and the United States. 

 

Results: In most countries, work capacity is assessed at several time points, with variations in moments and in information used for job matching. In countries obtaining information on personal and work levels, the search to find a job match usually begins with the persons who have disabilities.

 

Conclusion: Although a shift towards a holistic focus in work capacity assessment has been recognized, medical factors still prevail. Limited emphasis is placed on the implications of functional limitations for the possibilities of work. A holistic approach to assessment needs to be coupled with holistic support measures through provision of coordinated and high quality job matching services.

Understanding paid support relationships: possibilities for mutual recognition between young people with disability and their support workers

ROBINSON, Sally
GRAHAM, Anne
FISHER, Karen R
NEALE, Kate
DAVY, Laura
JOHNSON, Kelley
HALL, Ed
2020

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The quality of paid relationships is key for effective support, yet little is known about how people receiving and providing sup- port understand and experience the relationship. This paper reports on recent research that explored the role of relationships with paid support workers in strengthening the rights and well- being of young people with cognitive disability in Australia. The research used photo-rich participatory methods with 42 pairs of young people and their support workers and drew on Honneth’s recognition theory to specifically explore experiences of being valued, respected and cared about in their work together. The findings point to the importance of these con- nected aspects of recognition in paid support relationships, highlighting both the presence and absence of these, as well as experiences of misrecognition. The implications of recognition for strengthening support need close consideration in an inter- national context characterised by personalisation of support, resource constraints and inquiries into poor practice.

Use of technology by orientation and mobility professionals in Australia and Malaysia before COVID-19

DEVERELL, Lil
BHOWMIK, Jahar
LAU, Bee Theng
AL MAHMUD, Abdullah
SUKUNESAN, Suku
ISLAM, Fakir M Amirul
MCCARTHY, Chris
MEYER, Denny
2020

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Purpose

Orientation and Mobility (O&M) professionals teach people with low vision or blindness to use specialist assistive technologies to support confident travel, but many O&M clients now prefer a smartphone. This study aimed to investigate what technology O&M professionals in Australia and Malaysia have, use, like, and want to support their client work, to inform the development of O&M technologies and build capacity in the international O&M profession.

 

Materials and Methods

A technology survey was completed by professionals (n = 36) attending O&M workshops in Malaysia. A revised survey was completed online by O&M specialists (n = 31) primarily in Australia. Qualitative data about technology use came from conferences, workshops and interviews with O&M professionals. Descriptive statistics were analysed together with free-text data.

 

Results

Limited awareness of apps used by clients, unaffordability of devices, and inadequate technology training discouraged many O&M professionals from employing existing technologies in client programmes or for broader professional purposes. Professionals needed to learn smartphone accessibility features and travel-related apps, and ways to use technology during O&M client programmes, initial professional training, ongoing professional development and research.

 

Conclusions

Smartphones are now integral to travel with low vision or blindness and early-adopter O&M clients are the travel tech-experts. O&M professionals need better initial training and then regular upskilling in mainstream O&M technologies to expand clients’ travel choices. COVID-19 has created an imperative for technology laggards to upskill for O&M tele-practice. O&M technology could support comprehensive O&M specialist training and practice in Malaysia, to better serve O&M clients with complex needs.

The outcomes of individualized housing for people with disability and complex needs: a scoping review

OLIVER, Stacey
Gosden-Kaye, Emily Z
WINKLER, Dianne
DOUGLAS, Jacinta M
2020

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PURPOSE: Worldwide, disability systems are moving away from congregated living towards individualized models of housing. Individualized housing aims to provide choice regarding living arrangements and the option to live in houses in the community, just like people without disability. The purpose of this scoping review was to determine what is currently known about outcomes associated with individualized housing for adults with disability and complex needs.

 

METHODS: Five databases were systematically searched to find studies that reported on outcomes associated with individualized housing for adults (aged 18–65 years) with disability and complex needs.

 

RESULTS: Individualized housing was positively associated with human rights (i.e., self-determination, choice and autonomy) outcomes. Individualized housing also demonstrated favourable outcomes in regards to domestic tasks, social relationships, challenging behaviour and mood. However, outcomes regarding adaptive behaviour, self-care, scheduled activities and safety showed no difference, or less favourable results, when compared to group homes.

 

CONCLUSIONS: The literature indicates that individualized housing has favourable outcomes for people with disability, particularly for human rights. Quality formal and informal supports were identified as important for positive outcomes in individualized housing. Future research should use clear and consistent terminology and longitudinal research methods to investigate individualized housing outcomes for people with disability.

Life altering effects on children when a family member has an acquired brain injury; a qualitative exploration of child and family perceptions

DAWES, Kate
CARLINO, Ashley
VAN DER BERG, Maayken
KILLINGTON, Maggie
May 2020

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Objective: To investigate the impact of familial acquired brain injury on children and adult family members, including their views of the support provided, gaps and recommendations for future interventions.

 

Research design: Qualitative exploratory study using a phenomenological approach.

 

Method: Twenty-six participants were recruited from 12 families across the South AustralianBrain Injury Rehabilitation Service (SABIRS) and external community brain injury agencies in Adelaide, South Australia. Sixteen children aged 5–18 participated through ten semi-structured interviews. Ten adults attended six interviews. Following transcription and member checking, thematic analyses occurred with pooled data from all interviews undergoing open, axial and selective coding.

 

Main results: Analyses revealed four main themes: (1) help parents help their children, (2) improve family functioning by giving children meaningful roles, (3) staff: don’t leave children “in the dark,” and (4) support for children is not one size fits all.

 

Conclusions: Children and adults reported significant gaps in support offered by acute and brain injury services after familial acquired brain injury. Children and adults need to receive intervention in addition to the patient. To fill identified gaps, participants recommended more input by clinical staff including the use of technology; specifically, the development of age-appropriate applications, educational videos and interactive games.

Catering for ‘very different kids’: distance education teachers’ understandings of and strategies for student engagement

HARRIS, Lois
DARGUSCH, Joanne
AMES, Kate
BLOOMFIELD, Corey
2020

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Compulsory distance education has always sought to be inclusive, providing educational opportunities for K-12 students unable to attend mainstream, face-to-face schools for medical, geographical, or personal reasons. However, how to effectively engage these diverse learners has remained a perpetual challenge, with a need for further investigation into the nature of student engagement with compulsory school distance contexts and how teachers can best support it. This qualitative study used focus groups (n=2 groups, n=16 participants) to examine teacher definitions and student engagement strategies within eKindy-12 distance education in Queensland, Australia. Categorical analysis was conducted using a priori codes for definitions, focusing on four previously established engagement types (i.e. behavioural, emotional, cognitive, and agentic engagement), and in vivo codes for strategies. Teacher definitions focused strongly on behavioural engagement, but most also contained elements of emotional and cognitive engagement; agentic engagement was only occasionally evidenced via practice descriptions. Teachers described engaging students by: building relationships, creating a safe classroom environment through differentiation, using inclusive technological tools to facilitate interaction and monitor progress, making learning fun and relevant, drawing on school-wide pedagogical frameworks and teaching strategies, and encourage self-regulation. Findings suggest distance education teachers face unique challenges around evidencing engagement and supporting student agency.

Storying disability’s potential

WHITBURN, Ben
GOODLEY, Dan
2019

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In this paper, we weave in and out of theory and narrative in order to consider the potential of disability and its relationship to knowledge construction. We consider theories to be stories that one can tell about the world. And these theories are enlivened by other stories that we tell about ourselves and the world around us. As disability researchers, we explore the ways in which disability becomes known in the world and we do so through our own tales and theoretical narratives of knowing disability. In telling stories, then, we break down artificial boundaries between theory and narrative. And in theorising our stories – and storying our theories – we seek to explore the potential of disability to unsettle and challenge exclusionary curriculum. This textual assemblage traverses diverse themes including diagnosis, school programming, welfare, transportation, social interaction and access.

Gender, sexuality and relationships for young Australian women with intellectual disability

O’SHEA, A
FRAWLEY, P
2019

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Gender has often been overlooked in the lives of people with intellectual disability, resulting in a limited understanding and service response. This is in part due to a lack of knowledge about the way people with intellectual disability negotiate and build a gendered identity. In this article we present research undertaken with six young women with an intellectual disability who worked with the first researcher to co-develop some stories from their lives. We show how, facilitated by an innovative method which focused on meaningful engagement, the women told stories of richly gendered lives and subjectivities. Their stories showed how gender can be a desired and productive subjectivity, and how consideration of gender can help to identify resistance and agency in their lives. Their stories illustrate how gender is necessary in forming a comprehensive understanding of the lives of women with intellectual disability.

Sport coaches as policy actors: an investigation of the interpretation and enactment of disability and inclusion policy in swimming in Victoria Australia

HAMMOND, Andrew M
PENNEY, Dawn
JEANES, Ruth
2019

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This paper draws upon education policy sociology, and sport coaching literature, in critically examining sport coaches as policy actors. Stephen Ball and colleagues’ conceptualisation of different policy actor positions and roles provided the framework for research that investigated how eight professional swimming coaches in Victoria, Australia, interpreted and enacted disability and inclusion policy. A discourse analysis of semi-structured interviews with the eight coaches reveals the complexities associated with how and why different coaches interpret and enact disability and inclusion policy imperatives in different ways in their specific club contexts. Data are presented that shows coaches adopting multiple and hybrid policy actor positions and roles as disability and inclusion policy was interpreted, translated and ultimately, expressed as pedagogic rules and practices. Our discussion brings to the fore questions about power, agency and control in coaching, while highlighting both limits and possibilities for the enactment of inclusive disability sport policies by swimming coaches working in Victoria, Australia. In conclusion we suggest that this research illustrates that coaches are capable of enacting social change, and have some agency to do so, but at the same time appear constrained by established discourses that shape policy and give important direction to pedagogic practice. We advocate that further in-depth research is required into the coaching policy-practice nexus, particularly as it relates to the advancement of equity and inclusion.

Interpretative accounts of work capacity assessment policy for young adults with disabilities

STAFFORD, Lisa
MARSTON, Greg
BEATSON, Amanda
CHAMORRO-KOC, Marianella
DRENNAN, Judy
2019

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Young adults with disabilities are a specific target of the welfare-to-work policy introduced by many OECD countries over the past decade. The implementation of these policies is a significant concern for service delivery organisations and advocates in Australia and internationally due to complex intersecting structural barriers that persist for many young adults with disabilities. A particular focus of this article is work capacity assessments. Drawing on socio-political theories and interpretive policy analysis, the 22 in-depth interviews with personnel from service delivery organisations and advocacy organisations reveal how the deemed capacity to work process is not only interpreted as flawed, but the current policy approach disables young adults, perpetuates stigma, and creates division between service users and service providers. The accounts reinforce the need to contest such assessments and instead turn towards a rights-based capability approach permitting young adults with disability self-determination over their education-to-employment pathway.

Impact of transition to an individualised funding model on allied health support of participation opportunities

FOLEY, Kristen
ATTRILL, Stacie
MCALLISTER, Sue
BREBNER, Chris
February 2019

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Introduction: The National Disability Insurance Scheme is the new consumer-controlled funding system for people with disability in Australia, and is expected to enhance participation outcomes of people with disability. This research explored participation opportunities for people with disability during the formative period of transition to the scheme, through stakeholder accounts of changes in allied health service contexts.

 

Materials and methods: Qualitative data were generated during interviews, workshops and meetings with industry, policy, practice and education stakeholders involved in scheme services. Inductive coding explored key themes within the data. The International Classification of Functioning model was then applied as a deductive coding framework to illuminate how the scheme was perceived to be impacting participation opportunities for recipients of scheme funding.

 

Results and discussion: Using the International Classification of Functioning helped us illuminate whether changes resulting from scheme transition posed participation opportunities or barriers for scheme recipients. Research participants often framed these changes negatively, even when examples suggested that changes had removed participation barriers for scheme recipients. Some participants viewed changes as obstructing equitable and quality professional practice. We explore potential opportunities to resolve tensions that also optimise the participation outcomes of individuals who receive services through individualised funding.

Development of an evidence-based practice framework to guide decision making support for people with cognitive impairment due to acquired brain injury or intellectual disability

DOUGLAS, Jacinta
BIGBY, Christine
November 2018

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Purpose: At least 5% of people in Australia and the USA have cognitive impairment and require support for decision-making. This paper details a research program whereby an evidence-based Support for Decision Making Practice Framework has been developed for those who support people with cognitive disabilities to make their own decisions across life domains.

 

Methods: The La Trobe framework was derived from a research program modeled on the Medical Research Council four-phase approach to development and evaluation of complex interventions. We completed phase one (development) by: (1) systematically reviewing peer-reviewed literature; and (2) undertaking qualitative exploration of the experience of support for decision-making from the perspectives of people with cognitive disabilities and their supporters through seven grounded theory studies. Results of phase two (feasibility and piloting) involving direct support workers and health professionals supported phase three (evaluation) and four (implementation), currently underway.

 

Results: The framework outlines the steps, principles, and strategies involved in support for decision-making. It focuses on understanding the will and preferences of people with cognitive disabilities and guides those who provide support including families, support workers, guardians, and health professionals.

 

Conclusions: This framework applies across diverse contemporary contexts and is the first evidence-based guide to support for decision-making.

Understanding barriers, enablers, and long-term adherence to a health behavior intervention in people with multiple sclerosis

BARNARD, Emma
BROWN, Chelsea R
WEILAND, Tracey J
JELINEK, George A
MARCK, Claudia H
October 2018

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Background: The optimal management strategy for multiple sclerosis (MS), and many other chronic diseases, likely involves health behavior modification. Multimodal behavioral interventions may be most effective, but little is known about long-term adherence in people with MS.

 

Methods: This qualitative study assessed barriers and enablers to long-term adherence by people with MS who self-selected for a 5-day health behavior intervention 3–5 years prior. Thirteen women and five men participated in semi-structured phone interviews, which were transcribed and thematically analyzed.

 

Results: The experience was described as useful for information gathering, decision making, and practical strategies regarding health behaviors. The majority still followed supplementation and dietary recommendations most of the time, although consuming non-recommended food while eating out was common. Support at home, ability and enjoyment in food preparation, and ability to resist unhealthy foods were both barriers and enablers. Adherence to “time-consuming” exercise and meditation recommendations were less common and episodic. Many reported competing interests on time from work and family; and barriers including injuries and symptoms, weather, financial or geographical barriers, and lack of person-centred support and motivation. Increased fitness and mobility, weight loss, and a sense of accomplishment and control were advantages and motivators. Practical and attitudinal strategies employed included planning, tailoring activities to ability and preference, and self-monitoring.

 

Conclusion: While most people attempted to engage with all components of the intervention initially, only some still engaged with all components, and none to the recommended levels. These data can inform future quantitative studies and health behavior interventions.

Re-theorising inclusion and reframing inclusive practice in physical education

PENNEY, Dawn
JEANES, Ruth
O'CONNOR, Justen
ALFREY, Laura
2017

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Inclusion remains a key political agenda for education internationally and is a matter that teachers across subject communities and phases of education are challenged to respond to. In physical education specifically, research continues to highlight that current practice often reaffirms rather than challenges established inequities. This paper critically explores the understandings of inclusion that contribute to this situation and addresses the challenge of advancing inclusion in physical education from conceptual and pedagogical viewpoints. DeLuca’s [(2013). “Toward an Interdisciplinary Framework for Educational Inclusivity.” Canadian Journal of Education 36 (1): 305–348] conceptualisation of normative, integrative, dialogical and transgressive approaches to inclusion is employed as a basis for critical analysis of current practice and for thinking afresh about inclusive practice in physical education in relation to curriculum, pedagogy and assessment. Analysis informs the presentation of a set of principles that are designed to assist teachers and teacher educators to transform inclusive practice in physical education and in doing so, realise visions for physical education that are articulated in international policy guidelines and contemporary curriculum developments.

Re-theorising inclusion and reframing inclusive practice in physical education

PENNEY, Dawn
JEANES, Ruth
O'CONNOR, Justen
ALFREY, Laura
2017

Expand view

Inclusion remains a key political agenda for education internationally and is a matter that teachers across subject communities and phases of education are challenged to respond to. In physical education specifically, research continues to highlight that current practice often reaffirms rather than challenges established inequities. This paper critically explores the understandings of inclusion that contribute to this situation and addresses the challenge of advancing inclusion in physical education from conceptual and pedagogical viewpoints. DeLuca’s [(2013). “Toward an Interdisciplinary Framework for Educational Inclusivity.” Canadian Journal of Education 36 (1): 305–348] conceptualisation of normative, integrative, dialogical and transgressive approaches to inclusion is employed as a basis for critical analysis of current practice and for thinking afresh about inclusive practice in physical education in relation to curriculum, pedagogy and assessment. Analysis informs the presentation of a set of principles that are designed to assist teachers and teacher educators to transform inclusive practice in physical education and in doing so, realise visions for physical education that are articulated in international policy guidelines and contemporary curriculum developments.

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