ORCID Profile
0000-0001-7001-8976
Current Organisation
La Trobe University
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Research Topics
In Research Link Australia (RLA), "Research Topics" refer to ANZSRC FOR and SEO codes. These topics are either sourced from ANZSRC FOR and SEO codes listed in researchers' related grants or generated by a large language model (LLM) based on their publications.
Top 5 Research Topics
ANZSRC Field of Research (FoR)
Public Health and Health Services | Social Policy | Social Work | Care For Disabled | Counselling, Welfare and Community Services | Social Work not elsewhere classified | Care for Disabled | Social Program Evaluation | Health And Community Services | Human Geography | Social Change | Social Program Evaluation | Historical Studies | Mental Health | Social and Cultural Geography | Health and Community Services | History: Australian | Urban and Regional Studies (excl. Planning) | Clinical Social Work Practice | Social Work Not Elsewhere Classified | Human Rights and Justice Issues | Urban Sociology and Community Studies | Residential Client Care | Counselling, Welfare And Community Services | Social Policy And Planning | Social Policy
ANZSRC Socio-Economic Objective (SEO)
Ability and disability | Ability and Disability | The aged | Changing work patterns | Structure, Delivery and Financing of Community Services | Preserving institutional and organisational histories | Health related to ageing | Ageing and Older People | Public Services Policy Advice and Analysis | Law Reform | Comparative Structure and Development of Community Services | Carers development and welfare (i.e. Carers for the aged, disabled) | Other social development and community services | Families and Family Services | Health status (e.g. indicators of “well-being”) |
Related Links
Publications
The significance of research to practice during the COVID-19 pandemic
Publisher: Informa UK Limited
Date: 02-01-2020
But why are these questions being asked?: A commentary on Emerson (2004)
Publisher: Informa UK Limited
Date: 09-2004
'I Feel Free': the Experience of a Peer Education Program with Fijians with Spinal Cord Injury
Publisher: Springer Science and Business Media LLC
Date: 13-11-2018
A systematic review of hospital experiences of people with intellectual disability
Publisher: Springer Science and Business Media LLC
Date: 25-10-2014
Editorial: The quality and integrity of Australian social work
Publisher: Informa UK Limited
Date: 20-11-2008
Delivering decision making support to people with cognitive disability—What more has been learned from pilot programmes in Australia and internationally from 2016 to 2021?
Publisher: Wiley
Date: 27-10-2023
DOI: 10.1002/AJS4.295
Self-Advocacy as a Means to Positive Identities for People with Intellectual Disability: ‘We Just Help Them, Be Them Really’
Publisher: Wiley
Date: 29-10-2017
DOI: 10.1111/JAR.12223
Abstract: Stigma attached to having an intellectual disability has negative implications for the social identities and inclusion of people with intellectual disability. The study explored the effects of membership of independent self-advocacy groups on the social identity of people with intellectual disability. Using a constructivist grounded theory methodology, semi-structured interviews were conducted with 25 members of six self-advocacy groups which varied in size, resources, location and policy context: two based in the Australian states of Victoria and Tasmania and four in the UK. Collegiality, ownership and control by members characterized groups. They gave members opportunities for paid or voluntary work, skill development and friendship which contributed to their confidence and engagement with life. Possibilities for new more positive identities such as being an expert, a business-like person, a self-advocate and an independent person were opened up. Self-advocacy is an important means of furthering social inclusion of people with intellectual disability.
Residential aged care for people with intellectual disability: A matter of perspective
Publisher: Wiley
Date: 25-07-2014
DOI: 10.1111/AJAG.12086
Abstract: This paper explores the experiences of older people with intellectual disability (ID) who moved from a group home to residential aged care, from the perspective of family members, aged care staff and former group home staff. Interviews were conducted with staff and family members associated with 10 people with ID who recently moved from disability group homes into nine aged care residential facilities. Dimensional analysis was used to analyse 31 interviews. Aged care staff focused primarily on health outcomes and identified and addressed several previously undiagnosed conditions. The primary concern of staff from the residents' former group homes was social isolation. Families acknowledged the health benefits but were equally concerned about social isolation. The findings highlight the importance of addressing health and social needs of people with ID and indicate that an increased accountability for both social and clinical outcomes is required.
Communication access on trains: a qualitative exploration of the perspectives of passengers with communication disabilities
Publisher: Informa UK Limited
Date: 26-09-2019
DOI: 10.1080/09638288.2017.1380721
Abstract: The often-invisible access barriers to public transport encountered by people with communication disabilities, who have sensory, language or cognitive impairments have gained little attention. This study investigated the experiences of people with communication disabilities on a rail network in Victoria, Australia to identify the barriers they encountered. Twenty-one passengers with communication disabilities participated in either an in idual interview or a focus group. They talked about their experiences of train travel, factors that made travelling difficult and suggestions for making travelling easier. A six-phase approach to thematic analysis was conducted to identify themes. The difficulties identified in travelling fell into three themes: (a) variable accessibility of information, (b) negative impact of a large and complex service system, and (c) an uncertain culture of help seeking and giving. Only two passengers had ever complained but all identified ways to improve the service. They suggested, better staff training, more use of communication tools, mechanisms to enable passengers to seek help, and attention to making information easier to understand. For transport to be accessible to people with communication disabilities many different types of adjustment are required. Using multiple modes of communication with attention to understandability and consistent responses from public contact staff skilled to interact in multiple ways, may be the most flexible and effective means of responding to difficulties posed by the complex and unpredictable nature of train services. Implications for Rehabilitation People with communication disabilities are a erse group which includes people with physical, sensory, speech, language, and cognitive impairments. Public transport services need to provide a range of communication adjustments to enable people with communication disabilities to travel successfully. Transport services must retain and refine accessible alternatives to online information and booking systems for people with cognitive impairments to avoid widening the digital ide. Frequent and unavoidable changes to train services mean that skilled public contact staff, access to information and a culture of help seeking and giving are particularly important in facilitating access for people with communication disabilities.
Identifying good group homes: Qualitative indicators using a quality of life framework
Publisher: American Association on Intellectual and Developmental Disabilities (AAIDD)
Date: 10-2014
DOI: 10.1352/1934-9556-52.5.348
Abstract: Despite change toward more in idualized support, group homes are likely to remain for people with severe intellectual disability. As such, the search continues for ways to determine and maintain the quality of these settings. This article draws on in-depth qualitative analysis of participant observations conducted over 9–12 months in seven group homes for 21 people with a severe and profound level of intellectual disability. It explores the conceptualization of good outcomes and support for this group in terms of their quality of life and staff practices. The qualitative indicators of good outcomes for this group using quality of life domains can be used by auditors, community visitors, funders, advocates, or family members to guide observation and judgements about group homes.
Empowering people with intellectual disabilities to challenge stigma
Publisher: Palgrave Macmillan UK
Date: 2016
Australian work health and safety enforcement regarding service provision to people with disabilities: lessons for service providers*
Publisher: Informa UK Limited
Date: 25-05-2023
Social Work Research in the Field of Disability in Australia: A Scoping Review
Publisher: Informa UK Limited
Date: 08-10-2018
The Types of Scholarly Publications Produced by Australian Social Work Researchers
Publisher: Informa UK Limited
Date: 29-11-2021
Social inclusion and people with intellectual disability and challenging behaviour: A systematic review
Publisher: Informa UK Limited
Date: 25-09-2012
DOI: 10.3109/13668250.2012.721878
Abstract: Social inclusion is central to disability policies internationally. The high risk of social exclusion for people with intellectual disability is compounded for those with challenging behaviour. A systematic literature review examined how social inclusion of people with intellectual disability and challenging behaviour has been researched and operationalised in the empirical literature, and aimed to determine what evidence exists about the extent of social inclusion by people with intellectual disability and challenging behaviour. A thematic analysis of the 14 papers identified that social inclusion has been poorly defined and measured, and that the little research that has occurred in respect of people with challenging behaviour has demonstrated their potential to be socially included. Clearer conceptualisation of inclusion, and greater understanding of practices that support social inclusion and system level mechanisms, which ensure goals around inclusion gain prominence in funding and support plans, may address the neglect of this critical quality-of-life domain for people with challenging behaviour.
Providing support for decision making to adults with intellectual disability: Perspectives of family members and workers in disability support services
Publisher: Informa UK Limited
Date: 15-10-2019
Navigating the complexity of disability support in tertiary education: perspectives of students and disability service staff
Publisher: Informa UK Limited
Date: 17-01-2017
How leaders in day service organisations understand service quality
Publisher: Informa UK Limited
Date: 03-07-2021
Critical Realism in Social Work Research: Examining Participation of People with Intellectual Disability
Publisher: Informa UK Limited
Date: 05-05-2015
A case study about the supported participation of older men with lifelong disability at Australian community-based Men's Sheds
Publisher: Informa UK Limited
Date: 14-06-2015
Final Report: Building Capability to support Client Decision Making
Publisher: La Trobe
Date: 2020
Analysis of Australian Research Council Grants Awarded for Social Work Projects 2008–2017
Publisher: Informa UK Limited
Date: 03-2020
Aging with a disability: What the clinician needs to know.
Publisher: Informa UK Limited
Date: 06-2005
Social work and disability: An uneasy relationship
Publisher: Informa UK Limited
Date: 03-2010
Debates about dedifferentiation: twenty-first century thinking about people with intellectual disabilities as distinct members of the disability group12
Publisher: Informa UK Limited
Date: 02-01-2017
‘Mainstreaming’ Meets ‘Choice and Control’: Unsettling Neoliberal Imaginaries of Service Choice
Publisher: SAGE Publications
Date: 12-12-2023
DOI: 10.1177/23996544221146051
Abstract: ‘Mainstreaming’ and ‘Choice and control’ agendas have played a dominant role in shaping disability policy and advocacy in many countries since the 1970s, however scholarship is yet to critically explore the tensions and synergies between the two. ‘Mainstreaming’ is the aspiration to move people with disability out of ‘specialist’ spaces designed specifically for them, and into ‘mainstream’ spaces open to people of all abilities. ‘Choice and control’ concerns efforts to enhance autonomy and self-determination for people with disability. In this paper we interrogate the relationship between ‘choice and control’ and ‘mainstreaming’, both conceptually and through empirical examination of choices made by people with intellectual disability about use of mainstream services in four Australian cities. Our analysis shows their ability to choose is severely constrained by excessive control practiced by supporters, funding restrictions, affordability constraints, and exclusionary practices in mainstream services. We argue that the potential for both ‘choice and control’ and ‘mainstreaming’ has been constrained by neoliberal socio-spatial imaginaries in which they have been framed.
Implementation of active support over time in Australia
Publisher: Informa UK Limited
Date: 24-07-2019
Factors associated with experiences of abuse among lesbian, gay, bisexual, trans, queer, and asexual (LGBTQA+) adults with disability in Australia
Publisher: Elsevier BV
Date: 04-2023
Life stories of people with intellectual disabilities in modern Australia
Publisher: Informa UK Limited
Date: 28-05-2019
Planning and support for people with intellectual disabilities
Publisher: Wiley
Date: 04-02-2008
Is there a hidden group of older people with intellectual disability and from whom are they hidden? lessons from a recent casefinding study
Publisher: Informa UK Limited
Date: 1995
Tensions between institutional closure and deinstitutionalisation: What can be learned from Victoria's institutional redevelopment?
Publisher: Informa UK Limited
Date: 10-2006
Examining the complexities of support for decision-making practice
Publisher: Springer International Publishing
Date: 2021
Competencies of front-line managers in supported accommodation: Issues for practice and future research
Publisher: Informa UK Limited
Date: 18-05-2012
DOI: 10.3109/13668250.2012.681772
Abstract: Front-line managers of supported accommodation for people with intellectual disability are assumed to have a key role in the realisation of outcomes for service users. Yet, their job has been little researched. A job analysis from Minnesota that identified 142 competencies required of effective front-line managers was used to examine what was expected of the equivalent position in Victoria, Australia. These competencies formed the basis of semistructured interviews with an extreme s le of 16 high-performing house supervisors and 5 more senior managers. Ninety-two percent of the original competences were retained, with changes in language and terminology to reflect the local context. Emergent findings highlighted the importance of house supervisors' "orientations." The findings support the proposition that the front-line manager's job is underpinned by core competencies and that the role merits further study. Issues of wider significance for human service organisations and researchers are discussed.
The potential for active mentoring to support the transition into retirement for older adults with a lifelong disability
Publisher: Informa UK Limited
Date: 09-2010
Empowering people with intellectual disabilities to challenge stigma
Publisher: Palgrave Macmillan UK
Date: 2016
Policy and practice issues in making an advance care directive with decision making support: A case study
Publisher: Wiley
Date: 30-03-2023
DOI: 10.1002/AJS4.261
Abstract: The Medical Treatment Planning and Decisions Act 2016 (Vic) is a step toward law reform to implement supported decision making and the rights of people with disabilities enshrined in the United Nations Convention on the Rights of Persons with Disabilities. The Act includes provisions to enable a person, who might otherwise be assessed as being without decision making capacity, to make an advance care directive with support. This case study explores the implementation of the Act through the experiences of a person with intellectual disability, their medical practitioner and supporter in making an advance care directive. The findings identify shortcomings of the Act that effectively exclude people with severe intellectual disabilities from supported decision making. They illustrate the need for greater institutional support for supported decision making and educational strategies for medical practitioners if the potential of the Act is to be realised for people with intellectual disabilities. Finally, the findings indicate the relevance of the La Trobe Support for Decision Making Practice Framework as a guide to decision support in this context.
Dedifferentiation and people with intellectual disabilities in the Australian National Disability Insurance Scheme: Bringing research, politics and policy together
Publisher: Informa UK Limited
Date: 24-06-2020
I want to see the queen: Experiences of service use by ageing people with an intellectual disability
Publisher: Informa UK Limited
Date: 06-2009
Comparative Program Options for Aging People with Intellectual Disabilities
Publisher: Wiley
Date: 06-2005
'We Just Call Them People': Positive Regard as a Dimension of Culture in Group Homes for People with Severe Intellectual Disability
Publisher: Wiley
Date: 10-2015
DOI: 10.1111/JAR.12128
Abstract: A dimension of the culture in group homes is staff regard for residents. In underperforming group homes, staff regard residents as being not 'like us' (Bigby, Knox, Beadle-Brown, Clement & Mansell, 2012). We hypothesized the opposite pole of this dimension, in higher performing group homes, would be that staff regard residents positively. Three in-depth qualitative case studies were conducted in higher performing group homes using participant observation, interviews and document review. Consistent pattern of staff practices and talk, as well as artefacts, demonstrated staff had a positive regard for residents, who were seen as being 'like us'. Explicit and continuing attention was given to sustaining positive regard for residents in everyday staff practices and to turning abstract values into concrete realities. This positive cultural norm was established, operationalized and embedded through structures, such as a formal policy about language, and processes such as peer monitoring and practice leadership.
Positioning the journal for the next decade
Publisher: Informa UK Limited
Date: 03-2006
Moving from Support for Decision-making to Substitute Decision-making: Legal Frameworks and Perspectives of Supporters of Adults with Intellectual Disabilities
Publisher: La Trobe University
Date: 03-03-2021
DOI: 10.26826/LAW-IN-CONTEXT.V37I3.174
Abstract: The United Nations Convention on Rights of Persons with Disabilities (UNCRPD) has significantly changed the way our society views models of decision-making for adults with cognitive impairment. The formerly-accepted substitute decision-making models – where a person can legally make decisions for an in idual, often guided by the ‘best interests’ principle – are considered less desirable than supported decision-making which prioritises an in idual’s ‘will, preferences and rights’. However, disciplinary differences in understandings about what these concepts entail and how they should look in policy, legal and practice frameworks persist. For many, supported decision-making is experienced through informal support for decision-making through close family, and in the absence of a legal appointment. What this support looks like and whether it can help achieve the aim of greater participation by people with intellectual disability is still being empirically examined. In addition, the circumstances when that support moves into informal substitute decision-making is largely unexplored. It is also unclear whether the reasons for such a shift mirror the legal requirements for the appointment of a formal substitute decision-maker under Australian law. This paper uses a subset of qualitative data from interviews with parents who act as supporters to adults who have an intellectual disability. The overall aim of the study was to explore the impact of training in applying a practice framework (the La Trobe Support for Decision Making Practice Framework) about effective support for decision-making. We show that promising development is reported from the impact of capacity-building training for supporters, with evidence that the decision-making capabilities of adults with intellectual disabilities can be seen to shift over a period of time and training informal supporters can be effective in moving the dial as to when a supporter finds it necessary to step in and make a substitute decision. However, we also demonstrate that considerations of ‘risk’ and future opportunities for the supported adult are nuanced factors taken into account by supporters who shifted into a substitute decision-maker role and this is not well accounted for in our legal frameworks.
Planning and decision making about the future care of older group home residents and transition to residential aged care
Publisher: Wiley
Date: 18-07-2011
DOI: 10.1111/J.1365-2788.2010.01297.X
Abstract: Planning for future care after the death of parental caregivers and adapting disability support systems to achieve the best possible quality of life for people with intellectual disability as they age have been important issues for more than two decades. This study examined perceptions held by family members, group home staff and organisational managers about the future of older residents and the decisions made that a move to residential aged care was necessary. Grounded Dimensional Analysis was used to guide data collection and analysis by an interdisciplinary research team. Three sets of interviews over a period of 18 months were conducted with a family member, house supervisor and the programme manager for each of seventeen older group home residents in Victoria. For the eight people for whom it was decided a move was necessary and the six who eventually moved focussed questions were asked about the decision-making process. While plans for lifelong accommodation in a group home proved unfounded, key person succession plans were effective. However, decisions to move to a residential aged care facility where necessary were made in haste and seen as a fait accompli by involved family members. Although family members take seriously their mandate to oversee well-being of their older relative, they have little knowledge about their rights or avenues to safeguard untimely or inappropriate decisions being made by professionals.
Social inclusion of LGBTQ and gender diverse adults with intellectual disability in disability services: A systematic review of the literature
Publisher: Wiley
Date: 26-07-2022
DOI: 10.1111/JAR.12925
Abstract: Lesbian, gay, bisexual, transgender, queer (LGBTQ) and gender erse adults with intellectual disability experience exclusion within disability services. This review explores the experiences of social inclusion/exclusion of this cohort in the context of disability services. A systematic search was conducted of peer‐reviewed research published between January 2014 and April 2019. Five databases returned 66 articles plus three from hand searches. Nine articles were included in this review. The Critical Appraisal Skills Programme tool was used to assess the quality of the research. NVivo 12 was used as a tool to organise the articles. Marginalisation of LGBTQ adults with intellectual disability in western societies is mirrored in disability organisations. There remains a dearth of research into experiences of transgender people with intellectual disability who use disability services. Research into interventions that support the inclusion of this cohort in disability support services is needed.
She's been involved in everything as far as I can see: Supporting the active participation of people with intellectual disability in community groups
Publisher: Informa UK Limited
Date: 11-11-2015
Issues in Researching the Ageing of People with Intellectual Disability
Publisher: Wiley
Date: 2008
Building social work scholarship
Publisher: Informa UK Limited
Date: 12-2009
Mediating community participation: practice of support workers in initiating, facilitating or disrupting encounters between people with and without intellectual disability
Publisher: Wiley
Date: 07-01-2015
DOI: 10.1111/JAR.12140
Abstract: Promoting community participation for people with intellectual disability through encounter with strangers is an integral part of the mission of disability support workers. This paper offers detailed micro-level analysis of the practices of support workers when they accompany a person with intellectual disability outside their home and explores the subtle differences which make some staff practices more effective than others in promoting more convivial encounters with strangers. Based on 160 h of observations of twenty-six adults with intellectual disability in a variety of public places, and interviews and focus groups with their support workers, the paper points to some of the critical judgements support workers need to make when considering whether, when and how to initiate or intervene in such encounters.
Retirement or just a change of pace: An Australian national survey of disability day services used by older people with disabilities
Publisher: Informa UK Limited
Date: 09-2004
'It's pretty hard with our ones, they can't talk, the more able bodied can participate': Staff attitudes about the applicability of disability policies to people with severe and profound intellectual disabilities
Publisher: Wiley
Date: 13-03-2009
DOI: 10.1111/J.1365-2788.2009.01154.X
Abstract: The level of resident's adaptive behaviour and staff facilitative practices are key sources of variation in outcomes for residents in community-based residential services. The higher the resident support needs the poorer their outcome. Although substantial investment has been made in values-based training for staff, their attitudes and the impact of these on practice is largely unexplored. The first study used ethnographic and action research methods to examine the daily lives of 25 residents with severe and profound intellectual disabilities (ID), who lived in five small group homes, and the attitudes of the staff supporting them. Thematic analysis of the data led to a proposition that although staff accept principles of inclusion, choice and participation for people with ID in general, they do not consider it feasible to apply these to the people with severe and profound ID to whom they provide support. The findings from a second study that used a group comparison design and administered a short questionnaire about staff attitudes to 144 direct-care staff and first-line managers working in disability services confirmed this hypothesis. The study suggests more focused attention is needed to staff understanding the values embedded in current policies and their application to people with more severe disabilities.
Responsiveness to self-report questions about loneliness: a comparison of mainstream and intellectual disability-specific instruments
Publisher: Wiley
Date: 19-03-2014
DOI: 10.1111/JIR.12024
Abstract: We compared responsiveness to two self-report assessments of loneliness: the UCLA Loneliness Scale (UCLALS) designed for the general community, and the Modified Worker Loneliness Questionnaire (MWLQ) designed for people with intellectual disability (ID). Participants were 56 older adults with disability - 40 in iduals with ID and 16 without ID. They were in idually assessed on the MWLQ and the UCLALS. The difficulty of the items in both scales was evaluated in relation to readability, features of question wording, question length and response format. The UCLALS was more difficult than the MWLQ on each of the difficulty dimensions assessed. There was significantly greater responsiveness to the MWLQ than the UCLALS, especially among people with ID. To enable as many people with ID as possible express their views on loneliness, the ID-specific MWLQ is a much better choice. However, this choice comes at the cost of ready comparison to loneliness data for the general community, which is available for widely used assessments such as the UCLALS.
Possibility and risk in encounter between people with and without intellectual disability
Publisher: Informa UK Limited
Date: 29-10-2021
Accommodating cognitive differences: New ideas for social work with people with intellectual disabilities
Publisher: Routledge
Date: 25-06-2019
COVID-19 IDD: A global survey exploring family members’ and paid staff’s perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers.
Publisher: F1000 Research Ltd
Date: 03-12-2020
DOI: 10.12688/HRBOPENRES.13077.2
Abstract: Background : This protocol outlines research to explore family members’ and paid staff’s perceptions of the impact of COVID-19 on in iduals with intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care. Methods : An anonymous online survey will be conducted with caregivers, both family members and paid staff, to explore their perceptions of the impact of COVID-19 in terms of demographics, living arrangements, access to services, social distancing, and carer wellbeing. The survey will be developed by the research team, many of whom are experts in intellectual disability within their own jurisdictions. Using back-translation our team will translate the survey for distribution in 18 countries worldwide for international comparison. The survey team have extensive personal and professional networks and will promote the survey widely on social media with the support of local disability and advocacy agencies. Statistical descriptive and comparative analyses will be conducted. Ethical approval has been obtained for this study from University College Dublin’s Human Research Ethics Committee (HS-20-28-Linehan). Dissemination : Study findings will be prepared in a number of formats in order to meet the needs of different audiences. Outputs will include academic papers, lessons learned paper, practice guidelines, reports, infographics and video content. These outputs will be directed to families, frontline and management delivering disability services, national-level policy makers, healthcare quality and delivery authorities, national pandemic organisations and international bodies.
COVID-19 IDD: A global survey exploring the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers
Publisher: F1000 Research Ltd
Date: 23-06-2020
DOI: 10.12688/HRBOPENRES.13077.1
Abstract: Background : This protocol outlines research to explore the impact of coronavirus disease 2019 (COVID-19) on in iduals who have intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care. Methods : An anonymous online survey will be conducted with caregivers, both family members and paid staff, to explore the impact of COVID-19 on this population in terms of demographics, living arrangements, access to services, the impact of social distancing, and also carer wellbeing. The survey will be developed by the research team, many of whom are experts in intellectual disability within their own jurisdictions. Using back-translation our team will translate the survey for distribution in 16 countries worldwide for international comparison. The survey team have extensive personal and professional networks in intellectual disability and will promote the survey widely on social media with the support of local disability and advocacy agencies. Statistical descriptive and comparative analyses will be conducted. Ethical approval has been obtained for this study from University College Dublin’s Human Research Ethics Committee (HS-20-28-Linehan). Dissemination : Study findings will be prepared in a number of formats in order to meet the needs of different audiences. Outputs will include academic papers, lessons learned paper, practice guidelines, reports, infographics and video content. These outputs will be directed to families, frontline and management delivering disability services, national-level policy makers, healthcare quality and delivery authorities, national pandemic organisations and international bodies.
Commentary on ASID position statement: Addressing the shortcomings of dedifferentiation: Introduction and Summary
Publisher: Informa UK Limited
Date: 02-01-2018
A process of decision-making support: Exploring supported decision-making practice in Canada
Publisher: Informa UK Limited
Date: 05-08-2021
Using the Concept of Encounter to Further the Social Inclusion of People with Intellectual Disabilities: what has been Learned?
Publisher: Informa UK Limited
Date: 18-11-2019
Australian Social Work Research: An Empirical Study of Engagement and Impact
Publisher: Oxford University Press (OUP)
Date: 03-12-2021
DOI: 10.1093/BJSW/BCAA170
Abstract: Internationally, non-academic research impact is assessed by governments as part of evaluating the quality of publicly funded research. A case study method was used to investigate the non-academic impact of Australian social work research. Interviews were conducted with fifteen leading researchers about outputs (research products, such as publications and reports), engagement (interaction between researchers and end-users outside academia to transfer knowledge, methods or resources) and impact (social or economic contributions of research). Twelve case studies were prepared using a standardised template. Content analysis highlighted ex les of impact, and theoretical and in vivo coding uncovered processes of engagement and impact. Different types of engagements with research end-users influenced impact in three areas: legislation and policy practices and service delivery and quality of life of community members. Engagement and impact were intertwined as research altered policy discourses and illuminated hidden social issues, preparing ground for subsequent, more direct impact. Likewise, academic and non-academic impacts were intertwined as research rigour and academic credibility were perceived to leverage influence. There was no evidence of achieving impact simply through the trickle-down effect of scholarly publication. The findings broaden understandings of how research influences policy and practice and iterative and indirect relationships between engagement and impact.
Identifying conceptualizations and theories of change embedded in interventions to facilitate community participation for people with intellectual disability: A scoping review
Publisher: Wiley
Date: 11-08-2018
DOI: 10.1111/JAR.12390
Abstract: Little progress has been made towards community participation of people with intellectual disability despite it being a policy aim since the 1980s. We aimed to identify the features of programmes designed to support community participation. A scoping review was conducted of peer-reviewed literature between 2000 and 2015, about interventions to support community participation for adults with intellectual disability. A small body of evidence relates to the design and effectiveness of interventions to enhance community participation. Seventeen studies reported programmes reflecting three conceptualizations of community participation (as social relationships, as convivial encounter and as belonging) that used strategies such as active mentoring, facilitative support worker practice and arts-based programmes. Studies showed the erse and person-centred nature of community participation and demonstrated the need for larger-scale studies of promising interventions that include details of costs, and strategies to guide implementation of policies to support community participation.
The Production and Dissemination of Australian Social Work Scholarship: A Citation Analysis
Publisher: Informa UK Limited
Date: 16-08-2022
Predicting good Active Support for people with intellectual disabilities in supported accommodation services: Key messages for providers, consumers and regulators
Publisher: Informa UK Limited
Date: 27-11-2020
Supporting workers with disabilities: a scoping review of the role of human resource management in contemporary organisations
Publisher: Wiley
Date: 17-05-2017
Social work research in the child protection field in Australia
Publisher: Oxford University Press (OUP)
Date: 17-12-2017
DOI: 10.1093/BJSW/BCV123
Position statement on housing and support for people with severe or profound intellectual disability
Publisher: Informa UK Limited
Date: 03-2009
Research End-User Perspectives about Using Social Work Research in Policy and Practice
Publisher: Oxford University Press (OUP)
Date: 14-02-2021
DOI: 10.1093/BJSW/BCAB022
Abstract: Research funding and assessment initiatives that foster engagement between researchers and research end-users have been adopted by governments in many countries. They aim to orient research towards achieving measurable impacts that improve economic and social well-being beyond academia. This has long been regarded as important in social work research, as it has in many fields of applied research. This study examined research engagement and impact from the perspective of research end-users working in human services. In-person or telephone interviews were conducted with forty-three research end-users about how they used research and interacted with researchers. Content analysis was undertaken to identify engagement strategies and thematic coding was employed to examine underpinning ideas about research translation into practice. Participants were involved in many types of formal and informal research engagements. They viewed research translation as a mutual responsibility but indicated that researchers should do more to improve the utility of their research for industry. The findings highlight the iterative nature of engagement and impact and raise questions about the infrastructure for scaling up impact beyond relationships between in idual researchers and their industry partners.
Health Education by Peers with Spinal Cord Injury: a Scoping Review
Publisher: Springer Science and Business Media LLC
Date: 21-09-2018
Breaking out of a distinct social space: Reflections on supporting community participation for people with severe and profound intellectual disability
Publisher: Wiley
Date: 08-04-2009
Encounter as a dimension of social inclusion for people with intellectual disability: Beyond and between community presence and participation
Publisher: Informa UK Limited
Date: 19-10-2011
Shifting Models of Welfare: Issues in Relocation from an Institution and the Organization of Community Living
Publisher: Wiley
Date: 29-08-2006
Taking each day as it comes: Staff experiences of supporting people with Down syndrome and Alzheimer's disease in group homes
Publisher: Wiley
Date: 30-04-2014
DOI: 10.1111/JIR.12048
Abstract: Disability staff are being increasingly required to support adults with Down syndrome who develop Alzheimer's disease. They have little understanding of the nature of care required, and may lack input from aged care and dementia services, which lack knowledge of intellectual disability. The aim of this study was to report on the experiences of disability staff in group homes supporting residents with Down syndrome and Alzheimer's disease in relation to their under understanding of what was happening to these residents, their responses to them, and how they felt about their support role. Disability support staff for nine adults with Down syndrome who had a diagnosis of Alzheimer's disease were interviewed twice, over intervals of 6-9 months. Interviews were transcribed and analysed for themes. Three key themes emerged - (i) struggling to understand change, (ii) taking each day as it comes, and (iii) he's got a disability and that's our job. Staff had only limited understanding of how Alzheimer's disease impacted the adults with Down syndrome, their responses to changes were ad hoc, and they used strategies on a trial and error basis. They were committed to providing care, but at the risk of rejecting input and support. The need for collaboration across disability, and aged and disability care was evident to facilitate aging-in-place and planned care transitions.
Disconnected expectations: Staff, family, and supported employee perspectives about retirement
Publisher: Informa UK Limited
Date: 15-08-2011
DOI: 10.3109/13668250.2011.598852
Abstract: Australia has few policies to support the transition of older people with intellectual disability from employment to retirement. This study aimed to identify the possibilities and barriers to retirement for older employees in supported employment services. Five distinct participant groups discussed retirement in 6 separate focus group interviews: staff from disability accommodation (7) and employment services (7), members of mainstream activity programs for older people (4), family members (5), and supported employees (2 groups of 6 people). Participants perceived retirement as a risk to the well-being and participation of employees. Participants were pessimistic about the availability of necessary support in retirement. The need for additional resources and skills was identified, but the utility of inclusion strategies was not recognised. Continued segregation through specialist programs or adaptation of existing employment programs was the most commonly suggested retirement option by staff and family members. Perceptions did not reflect the current policy imperatives of social participation. This poses an additional obstacle to conceptualising, planning, and supporting quality of life for older people with intellectual disability.
A prospective study of hospital episodes of adults with intellectual disability
Publisher: Wiley
Date: 16-03-2020
DOI: 10.1111/JIR.12725
Health issues of older people with intellectual disability in group homes
Publisher: Informa UK Limited
Date: 03-07-2014
Whose Life Story Is It? Self-Reflexive Life Story Research with People with Intellectual Disabilities
Publisher: Informa UK Limited
Date: 04-2017
DOI: 10.1093/OHR/OHW124
Delivering decision making support to people with cognitive disability - What has been learned from pilot programs in Australia from 2010 to 2015:
Publisher: Wiley
Date: 09-2017
DOI: 10.1002/AJS4.19
What constitutes effective support in obtaining and maintaining employment for individuals with intellectual disability? A scoping review
Publisher: Informa UK Limited
Date: 14-06-2018
Programs and Practices to Support Community Participation of People with Intellectual Disabilities
Publisher: Springer International Publishing
Date: 2021
Forming and supporting circles of support for people with intellectual disabilities–a comparative case analysis
Publisher: Informa UK Limited
Date: 14-08-2022
Conundrums of supported living: The experiences of people with intellectual disability
Publisher: Informa UK Limited
Date: 14-11-2017
Rankings, ratings, and reviews
Publisher: Informa UK Limited
Date: 12-2010
Facilitating transition: Elements of successful case management practice for older parents of adults with intellectual disability
Publisher: Informa UK Limited
Date: 17-12-2002
Performance, purpose, and creation of encounter between people with and without intellectual disabilities
Publisher: Informa UK Limited
Date: 02-01-2021
Uncovering dimensions of culture in underperforming group homes for people with severe intellectual disability
Publisher: American Association on Intellectual and Developmental Disabilities (AAIDD)
Date: 12-2012
DOI: 10.1352/1934-9556-50.06.452
Abstract: Culture recurs as an important but under-investigated variable associated with resident outcomes in supported accommodation for people with intellectual disability. This study aimed to conceptualize the potential dimensions of culture in all group homes and describe the culture in underperforming group homes. A secondary analysis, using an inductive interpretative approach, was undertaken of a large qualitative data set from a study that had used ethnographic and action research methods to explore the quality of life outcomes for residents in 5 small group homes. Five categories were developed: misalignment of power-holder values with organizations espoused values, otherness, doing for not with, staff centered, and resistance. Differences from institutional culture are discussed, and the potential of the findings as a starting point to consider culture in high performing group homes and develop a quantitative measure of culture.
Transferring responsibility: The nature and effectiveness of parental planning for the future of adults with intellectual disability who remain at home until mid-life
Publisher: Informa UK Limited
Date: 1996
Group homes for people with intellectual disabilities: encouraging inclusion and participation
Publisher: Wiley
Date: 13-05-2010
Maintaining Quality and Withstanding Challenges
Publisher: Informa UK Limited
Date: 12-2012
The development and utility of a program theory: Lessons from an evaluation of a reputed exemplary residential support service for adults with intellectual disability and severe challenging behaviour in Victoria, Australia
Publisher: Wiley
Date: 08-2011
Improving Quality of Life Outcomes in Supported Accommodation for People with Intellectual Disability: What Makes a Difference?
Publisher: Wiley
Date: 24-10-2018
DOI: 10.1111/JAR.12291
Abstract: The quality of life (QOL) of people with intellectual disability living in supported accommodation services is variable, influenced by many possible factors. Various frameworks have attempted to identify these factors without assigning value, direction of influence or relative impact on outcomes. A realist review of the literature aimed to expose different propositions about variables influencing QOL outcomes and review the strength of supporting evidence for these, to identify their relative influence. Evidence was reviewed for and against each of five clusters. Evidence was strongest for the presence of staff practices (use of Active Support), front-line management practice (use of practice leadership), culture (enabling and motivating), human resources policies and practice (that support front-line leaders and recruitment of staff with the right values), adequate resources, and small, dispersed and homelike settings. The evidence informs policy and practice but in some clusters remains limited, warranting further research which measures outcomes on all QOL domains.
Transition to retirement and participation in mainstream community groups using active mentoring: A feasibility and outcomes evaluation with a matched comparison group
Publisher: Wiley
Date: 11-12-2015
DOI: 10.1111/JIR.12174
Abstract: This paper reports on the feasibility and outcomes of a transition to retirement programme for older adults with disability. Without activities and social inclusion, retirees with disability are likely to face inactivity, isolation and loneliness. Matched intervention and comparison groups each consisted of 29 older in iduals with disability. There were 42 men and 16 women with a mean age of 55.6 years While attending their in idual mainstream community group 1 day per week, intervention group participants received support from community group members trained as mentors. We assessed participants' loneliness, social satisfaction, depression, life events, quality of life, community participation, social contacts, and work hours before and 6 months after joining a community group. Twenty-five (86%) of the intervention group attended their community group weekly for at least 6 months. They increased their community participation, made an average of four new social contacts and decreased their work hours. Intervention participants were more socially satisfied post-intervention than comparison group members. The results demonstrate that participation in mainstream community groups with support from trained mentors is a viable option for developing a retirement lifestyle for older in iduals with disability.
Increasing day service staff capacity to facilitate positive relationships with people with severe intellectual disability: Evaluation of a new intervention using multiple baseline design
Publisher: Informa UK Limited
Date: 24-10-2017
I'm in their shoes: Experiences of peer educators in sexuality and relationship education
Publisher: Informa UK Limited
Date: 25-02-2014
'Do You Think I'm Stupid?': Urban Encounters between People with and without Intellectual Disability
Publisher: SAGE Publications
Date: 06-02-2013
Abstract: Being amongst strangers is a definitive aspect of life in the modern city. To understand social inclusion in cities, it is necessary to consider not only the strength and extent of social networks of familiarity, but also the role of interactions with strangers in the public realm. People with intellectual disability are considered one of the most marginalised groups in society and the study applies the concept of encounter to offer a new perspective on their inclusion/exclusion, informed by contemporary urban theory rather than more nostalgic notions of community. The paper discusses encounters between people with and without intellectual disability in one suburb in Melbourne, Australia. The study is based, primarily, on field observations in a variety of settings in the public realm. Through analysis of these data, a typology of urban encounters is proposed that involves people with and without intellectual disability.
Access and linkage: Two critical issues for olderpeople with an intellectual disability in utilising day activity and leisure services
Publisher: Informa UK Limited
Date: 1992
Social Interaction with Adults with Severe Intellectual Disability: Having Fun and Hanging Out
Publisher: Wiley
Date: 02-01-2012
DOI: 10.1111/J.1468-3148.2011.00669.X
Abstract: Social interaction is integral to social inclusion. Little is known about the nature of social interaction between adults with severe intellectual disability and those with whom they engage. Participants were six adults with intellectual disability and people identified as those with whom they shared demonstrable pleasurable interactions. Data were collected through observation and interviews, and data were analysed using a constructivist grounded theory approach. An overarching category of sharing time together with two main sub-categories of Having fun and Hanging out emerged. Having fun was composed of routines and comedic interaction hanging out was comprised of contact and presence. Legitimizing mirth and sharing time in social interactions may supplement paid worker job satisfaction and increase opportunities for social inclusion by people with severe intellectual disability.
An international call for papers
Publisher: Informa UK Limited
Date: 06-2006
Beset by obstacles: A review of Australian policy development to support ageing in place for people with intellectual disability
Publisher: Informa UK Limited
Date: 03-2008
DOI: 10.1080/13668250701852433
Abstract: Australian government policy regards people with intellectual disability (ID) as citizens with equal rights, which means that they should have access to the same opportunities as the wider community. Ageing in place is central to aged care policy in Australia for the general population. This paper reviews policy to support the provision of similar opportunities to age in place for people with ID, and the reasons for its slow development. Due to lifestyle patterns earlier in the life course, many people with ID experience a mid-life disruption to their accommodation, and may live in a group home as they age or may move prematurely to residential aged care. The absence of mechanisms to adjust disability funding as needs change, and the existence of policy that denies residents in group homes access to community-based aged care, forces disability services to "go it alone" to support ageing in place. Despite a national priority to improve the interface between the disability and aged care sectors, administrative and funding characteristics continue to obstruct the development of implementation strategies to support ageing in place for people with ID, which remain at the stage of an exploration of the issues.
A National Disability Insurance Scheme-Challenges for Social Work
Publisher: Informa UK Limited
Date: 03-2013
COVID-19 IDD: Findings from a global survey exploring family members’ and paid staff’s perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities (IDD) and t
Publisher: F1000 Research Ltd
Date: 04-04-2022
DOI: 10.12688/HRBOPENRES.13497.1
Abstract: Background: A growing body of evidence attests to the disproportionate impact of COVID-19 on persons with intellectual and developmental disabilities (IDD) during the pandemic. This study asked caregivers about their perceptions of how COVID-19 impacted them and the people they support. Method: An online survey was conducted in 12 countries during August-September 2020 and sought information on demographics, support practices, information and training, experiences of COVID-19, social distancing, and wellbeing, as measured by the DASS12. This study reports on 3,754 family members, direct support professionals, and managers who participated in the survey. Results: Caregivers observed increases in depression/anxiety, stereotyped behaviours, aggression towards others and weight gain in the person(s) they supported. They also reported difficulties supporting the person(s) to access healthcare. Families reported reducing or ceasing employment and absorbed additional costs when supporting their family member. Direct support professionals experienced changes in staff shifts, staff absences, increased workload and hiring of casual staff. Caregivers’ wellbeing revealed high levels of stress, depression, and less so anxiety. The strongest predictor of wellbeing among families was observation of changes in mood in the person(s) they supported, while for direct support professionals, the strongest predictors of wellbeing were reorganisation of staff shifts and increases in new direct support staff. Discussion: Findings support the contention of this population experiencing a disproportionate burden during the COVID-19 pandemic, reflecting historical inequities in access to healthcare and other human rights violations which are now protected under the United Nations Convention on the Rights of Persons with Disabilities.
Making Life Good: An evaluation of a reputed exemplary residential support service for people with intellectual disability and severe challenging behaviour
Publisher: La Trobe
Date: 2010
DOI: 10.26181/20760712
The state of health services partnering with consumers: evidence from an online survey of Australian health services
Publisher: Springer Science and Business Media LLC
Date: 10-08-2018
More-than-care: People with intellectual disability and emerging vulnerability during pandemic lockdown
Publisher: Wiley
Date: 11-01-2023
DOI: 10.1111/TRAN.12595
Abstract: This paper offers more‐than‐care as a framework for analysing how vulnerability emerges in the lives of people with intellectual disability beyond relations of care. More‐than‐care detaches vulnerability from the identity category of disability. It provides a framework for conceptualising vulnerability in an unequal, neoliberalising, and ableist world and sheds new light on the ever‐evolving constitution of vulnerability and disability. This intervention breaks with conceptions of vulnerability centred on care needs that leave other circumstances that inform vulnerabilities unexamined. Importantly, the framework shifts responsibility for managing vulnerabilities away from carers alone. The more‐than‐care framework is grounded in socio‐material conceptualisations of disability and advances a tripartite framing of vulnerability. First, it grounds studies of vulnerability in histories of spatially uneven investment in infrastructure and resources that shape how care and other practices can assemble to produce, challenge, and manage vulnerability. Second, it recalibrates dominant conceptions of the temporality of vulnerability to ensure sensitivity to the unpredictability of emergent vulnerabilities. Third, in following a socio‐material conceptualisation of intellectual disability, more‐than‐care expands discussions about agency in the context of vulnerability. These concepts are empirically examined through an analysis of how vulnerability emerges in the lives of four self‐advocates with intellectual disability during Melbourne's first and second COVID‐19 lockdowns. The analysis shows that vulnerability was highly dynamic and unpredictable as it emerged in complex socio‐material assemblages that included care arrangements, embodied experiences and agencies, and past instances of neglect and exploitation.
Three modes of inclusion of people with intellectual disability in mainstream services: mainstreaming, differentiation and individualisation
Publisher: Informa UK Limited
Date: 11-04-2022
Representation and reporting of communicatively vulnerable patients in patient experience research
Publisher: Informa UK Limited
Date: 27-02-2019
Barriers to physical activity and sport participation for people with intellectual disabilities from culturally and linguistically diverse backgrounds*
Publisher: Informa UK Limited
Date: 03-07-2021
Writing the script. The overt and hidden contradictions of supporters' work in independent self-advocacy groups
Publisher: Informa UK Limited
Date: 02-05-2020
Moving on from Quality Assurance: Exploring Systems that measure both Process and Personal Outcomes in Disability Services
Publisher: Wiley
Date: 21-06-2020
DOI: 10.1111/JPPI.12295
Comparison of specialist and mainstream programs for older carers of adults with intellectual disability: Considerations for service development
Publisher: Wiley
Date: 09-2004
Known well by no-one: Trends in the informal social networks of middle-aged and older people with intellectual disability five years after moving to the community
Publisher: Informa UK Limited
Date: 06-2008
DOI: 10.1080/13668250802094141
Abstract: Informal relationships are central to conceptualisations of quality of life. Deinstitutionalisation studies consistently suggest a trend of increased contact with family and friends by people with intellectual disability (ID) following relocation from an institution to the community. In this study, changes in the nature of the informal relationships of residents 5 years after leaving an institution were examined. A s le of 24 participants was randomly selected from a group of 55 residents who moved to the community. Data were collected prior to leaving the institution, and 1, 3 and 5 years after the move, through interviews with staff, a telephone survey with 20 family members, and intensive case studies undertaken with a small purposive sub-s le of 11 residents. Data indicated that: (i) residents did not form new relationships after relocation, (ii) the number of residents in regular touch with a family member decreased, and (iii) patterns of contact changed as residents aged. Some 62% of residents had no-one outside the service system who knew them well or monitored their well-being. Services must take a more active role in supporting the development of relationships between in iduals with ID, particularly those who are middle-aged or older, and people outside the service system, and in adapting to the changing capacity of ageing families.
Being recognised and becoming known: Encounters between people with and without intellectual disability in the public realm
Publisher: SAGE Publications
Date: 2014
DOI: 10.1068/A46251
Abstract: The social inclusion of people with intellectual disability has typically been defined and measured in terms of their ‘presence’ and ‘participation’ in community life. In this paper we point to a very wide spectrum of social interactions—or ‘encounters’—between people with and without intellectual disability which fall into neither category. We offer the concepts of ‘being recognised’ and ‘becoming known’ to describe encounters which are neither passive presence in the community nor the fully fledged relationships of community participation. Rather, these concepts can be used to describe the day-to-day experiences of people with intellectual disability negotiating their use of public spaces and facilities in ways which can at times be different from prevailing norms. Based on a survey and interviews with local residents in three metropolitan suburbs and one country town in the State of Victoria, Australia, we analyse the social and spatial dynamics influencing the frequency and nature of encounters between people with and without intellectual disability.
What are Victoria's Disability Service Standards Really Measuring?
Publisher: Informa UK Limited
Date: 03-07-2014
Stories from the Wild West Frontier: The National Disability Insurance Scheme Experiences of People with Severe and Profound Intellectual Disability
Publisher: Springer Singapore
Date: 2021
Factors that Underpin the Delivery of Effective Decision-making Support for People with Cognitive Disability
Publisher: Informa UK Limited
Date: 02-01-2015
Inclusion in political and public life: The experiences of people with intellectual disability on government disability advisory bodies in Australia
Publisher: Informa UK Limited
Date: 14-02-2011
DOI: 10.3109/13668250.2010.549465
Abstract: Civil and political participation lies at the core of citizenship. Increasingly, people with intellectual disability are members of disability advisory bodies. This study investigated the political orientations of advisory body members with intellectual disability, their participatory experiences, and the types of support they received. The 9 people with intellectual disability who in 2005 were members of disability advisory bodies at a state, national, and Victorian local government level were interviewed, together with 12 other members or secretariat staff of these bodies. Observations were also conducted of advisory body meetings. The political perspective of members with intellectual disability varied, but all had a background in self-advocacy. They found the work hard but rewarding and encountered both practical and intangible obstacles to participation. Members received varying types of practical support, but a supportive collegial milieu was characteristic among members who felt most confident about their participation. The milieu, structures, and processes of advisory bodies must all be adjusted to accommodate people with intellectual disability if they are to participate meaningfully.
Norma Parker Addresses
Publisher: Informa UK Limited
Date: 09-2012
A survey of people with intellectual disabilities living in residential aged care facilities in Victoria
Publisher: Wiley
Date: 10-01-2001
DOI: 10.1111/J.1365-2788.2007.01040.X
Abstract: Australia's national ageing policy recognises that people ageing with intellectual disability (ID) require particular attention, yet there is no policy framework concerning this population. This study describes the distribution and characteristics of people with ID in residential aged care in Victoria, provides insights into the pathways they take into aged care, and gives some indications of how facilities adapt to their needs. A postal survey was sent to 826 residential aged care facilities in Victoria, seeking information from directors about their residents with ID. Facilities that responded were fairly representative of all facilities in Victoria. Residents with ID were younger, had entered at an earlier age and remained longer than other residents. Their reported dependency profile was similar to the general aged care population, although the incidence of dementia was lower. Primary areas of concern identified by providers were: inability to fit into the resident community, lack of participation in activities and lack of meaningful relationships. This study provides a first glimpse into how older people with ID find their way into aged care and how others view their experiences once there. It suggests that further investigation is required into the accuracy of assessment undertaken prior to entry to more clearly understand whether residents with ID are inappropriately placed in residential aged as a result of a shortage of disability accommodation and inadequate resources to support aging in place for those in such accommodation.
Whose decision is it anyway? How clinicians support decision-making participation after acquired brain injury
Publisher: Informa UK Limited
Date: 08-02-2013
DOI: 10.3109/09638288.2013.766270
Abstract: To raise professional awareness of factors that may influence the support offered by clinicians to people with acquired brain injury (ABI), and to consider the potential implications of these factors in terms of post-injury rehabilitation and living. A review of the literature was conducted to identify factors that determine how clinicians provide support and influence opportunities for in iduals with ABI to participate in decision making across the rehabilitation continuum. Clinical case studies are used to highlight two specific issues: (1) hidden assumptions on the part of the practitioner, and (2) perceptions of risk operating in clinical practice. There are a range of factors which may influence the decision-making support provided by clinicians and, ultimately, shape lifetime outcomes for in iduals with ABI. A multidimensional framework may assist clinicians to identify relevant factors and consider their potential implications including those that influence how clinicians involved in supporting decision making approach this task. Participation in decision making is an undisputed human right and central to the provision of person-centred care. Further research is required to understand how clinical practice can maximise both opportunities and support for increased decision-making participation by in iduals with ABI. There is an increasing focus on the rights of all in iduals to be supported to participate in decision making about their life. A number of changes associated with ABI mean that in iduals with ABI will require support with decision making. Clinicians have a critical role in providing this support over the course of the rehabilitation continuum. Clinicians need to be aware of the range of factors that may influence the decision-making support they provide. A multidimensional framework may be used by clinicians to identify influences on the decision-making support they provide.
Community participation as identity and belonging: a case study of Arts Project Australia. “I am an artist”
Publisher: Informa UK Limited
Date: 27-05-2014
Mentors' experiences of using the Active Mentoring model to support older adults with intellectual disability to participate in community groups
Publisher: Informa UK Limited
Date: 09-09-2013
DOI: 10.3109/13668250.2013.837155
Abstract: Social inclusion is a widely acknowledged goal who is best positioned to provide support and how support is delivered are key questions. Using Active Mentoring training, members of community groups mentored a person with intellectual disability and supported their inclusion in that group. Interviews with 14 mentors explored their experiences of supporting a previously unknown person with intellectual disability to participate in their community group. The core theme was No Different From Us. Mentors saw beyond the disability, they valued others, were community leaders, and had intrinsic qualities. With some basic orientation to the task, mentors were able to support the inclusion of their mentee in the group. Community members are willing to support people with intellectual disability to join their community groups. The Active Mentoring training is one way of harnessing the goodwill of community groups and their members to include people with intellectual disability to participate on an in idual basis in community groups.
Ethical challenges in researching in group homes for people with severe learning difficulties: shifting the balance of power
Publisher: Informa UK Limited
Date: 06-2013
“I’ve never been a yes person”: Decision-making participation and self-conceptualization after severe traumatic brain injury
Publisher: Informa UK Limited
Date: 22-08-2017
DOI: 10.1080/09638288.2016.1219925
Abstract: Although adults who sustain a severe traumatic brain injury (TBI) require support to make decisions in their lives, little is known about their experience of this process. The aim of this study was to explore how participation in decision making contributes to self-conceptualization in adults with severe TBI. We used constructivist grounded theory methods. Data included 20 in-depth interviews with adults with severe TBI. Through a process of constant comparison, analysis involved open and focused coding until clear categories emerged and data saturation was achieved. Self-conceptualization emerged as a complex and multifaceted process, as in iduals with TBI aimed to reestablish a sense of autonomy. We describe a recursive relationship in which decision-making participation assists the dynamic construction of self, and self-concept contributes to the experience of making decisions. The role of an in idual's social support network in acting as a bridge between participation and self-conceptualization is presented. Findings emphasize that contributing to decisions about one's own goals across a range of life areas can reinforce a positive self-concept. It is vital that supporters understand that participation in decision making provides a pathway to conceptualizing self and aim to maximize the person's participation in the decision-making process. Implications for Rehabilitation Previous research has identified that the experience of sustaining TBI has a significant impact on a person's conceptualization of self. This study identified that decision-making experiences play an important role in the ongoing process of self-conceptualization after injury. Decision-making experiences can reinforce a person's self-concept or lead them to revise (positively or negatively) their sense of self. By maximizing the person's decision-making participation, those around them can support them to develop positive self-attributes and contribute to shaping their future goals.
Considering Human Rights in Decision Making: Evaluation of the Introduction of Structured-Decision Making Framework in the Public Trustee Queensland
Publisher: La Trobe
Date: 2021
DOI: 10.26181/19374980
After-school jobs for students with intellectual disabilities
Publisher: La Trobe
Date: 2021
What is good service quality? Day service staff's perspectives about what it looks like and how it should be monitored
Publisher: Wiley
Date: 05-03-2021
DOI: 10.1111/JAR.12871
Abstract: Australian disability services must comply with quality standards defined by federal government. Standards are abstract, focus on paperwork and rarely describe what good service quality looks like in practice. This research explored frontline day service staff's perceptions of good service quality to identify ways that it may be better monitored. Using a constructivist grounded theory methodology, semi‐structured interviews were conducted with 9 frontline staff from 3‐day services. Interviews were recorded, transcribed and analysed for themes using constant comparison and line‐by‐line coding. Five categories of good practice were identified: collaborative hands‐on leadership, well‐planned services, respect for people with intellectual disabilities and their carers, a culture of continuous improvement and professionalization of the support worker role. Results align with research undertaken in accommodation services for people with intellectual disabilities, suggesting commonalities in frontline staff's perceptions of quality in both day and accommodation services.
Perspectives on Social Work in Australia from the Norma Parker Addresses and Key Papers in Australian Social Work
Publisher: Informa UK Limited
Date: 02-09-2017
Sibling Roles in the Lives of Older Group Home Residents with Intellectual Disability: Working with Staff to Safeguard Wellbeing
Publisher: Informa UK Limited
Date: 18-09-2015
An exploration of communication within active support for adults with high and low support needs
Publisher: Wiley
Date: 27-06-2019
DOI: 10.1111/JAR.12502
Abstract: The aim was to explore the relationship between quality of active support and communication support for people in group homes with high and low support needs. Data from 182 service users, 20–81 years (mean = 40), 89 with high support needs, were observed to have either good ( n = 142) or poor ( n = 40) communication support. Measures were of quality of active support, engagement and staff contact field notes provided ex les of good and poor communication supports. We found a relationship between the quality of communication support and active support. Receiving good communication was associated with higher levels of engagement. Field notes included some ex les of appropriate communication supports, but limited use of augmentative and alternative communication (AAC). Staff show limited use of appropriate communication with people having high support needs who require AAC. Strategies to improve quality of practice are discussed.
Issues of active ageing: Perceptions of older people with lifelong intellectual disability
Publisher: Wiley
Date: 17-04-2008
DOI: 10.1111/J.1741-6612.2008.00287.X
Abstract: The study aimed to investigate the lived experiences of older people with lifelong intellectual disability and to explore the meaning of active ageing for this group. Data were collected using semistructured interviews with 16 service users (people with lifelong intellectual disability aged 50+ years) 16 service providers and 16 key informal network members from regional/rural and urban areas in Queensland and Victoria. Themes identified: being empowered, being actively involved, having a sense of security, maintaining skills and learning, having congenial living arrangements, having optimal health and fitness, being safe and feeling safe and having satisfying relationships and support. Service users wanted to 'keep on keeping-on' in areas of life that gave them pleasure rather than discontinuing them because of age. They wanted more control over issues affecting their lives and to be given meaningful roles. Mental stimulation, companionship, reliable support and safety were valued by this group.
Implementation of active support in Victoria, Australia: An exploratory study
Publisher: Informa UK Limited
Date: 28-01-2013
DOI: 10.3109/13668250.2012.753996
Abstract: Active support is an effective intervention to support engagement of residents with intellectual disability in group homes. This survey explored resident characteristics of the people supported by organisations implementing active support, the provision of active support, its procedures and systems, and resident engagement in meaningful activity and relationships. Information was collected through questionnaires and direct observation of 33 group homes from 6 organisations in Victoria, Australia, with a 5-10-year history of implementing active support. Residents with lower support needs were engaged with little staff contact or assistance. Use of active support systems and structures was mixed. Only one organisation consistently provided good active support. Administrative systems and structures are not sufficient to change staff interaction and thus resident experience. Shared supported accommodation services may represent an inefficient use of resources for more able residents, as staff resources are not maximised to support for resident engagement.
Violence Prevention Strategies for People with Intellectual Disabilities: A Scoping Review
Publisher: Informa UK Limited
Date: 09-07-2020
Dimensions of group home culture as predictors of quality of life outcomes
Publisher: Wiley
Date: 27-05-2020
DOI: 10.1111/JAR.12748
“I used to call him a non-decision-maker - I never do that anymore”: parental reflections about training to support decision-making of their adult offspring with intellectual disabilities
Publisher: Informa UK Limited
Date: 03-09-2022
DOI: 10.1080/09638288.2021.1964623
Abstract: A rights perspective proposes supported decision-making as an alternative to substitute decision-making. However, evidence about supported decision-making practice is limited. Our aim was to build evidence about building the capacity of decision supporters. Eighteen parents of people with intellectual disabilities were trained in decision support using the La Trobe Support for Decision-making Practice Framework. Data from repeated semi-structured interviews and mentoring sessions were used to capture parental reflections on the value of training. The training acted as a catalyst for parent self-reflection and the Framework prompted them to adopt a more deliberative approach to supporting decision-making. Some parents perceived increased confidence of their adult offspring in expressing preferences resulting from their own changed approach. This study demonstrates the efficacy of this Framework and evidence-based training in building the capacity of parental decision supporters to be consistent with the rights paradigm. IMPLICATIONS FOR REHABILITATIONThe La Trobe Support for Decision-making Practice Framework is an evidence-based approach to decision support practice with an accompanying set of free online resources which can be used by in idual practitioners or programs to inform their practice and build the capacity of supporters.Parents of adults with intellectual disabilities value training in the La Trobe Support for Decision-making Practice Framework, which they consider helps to develop their decision support skills and self-reflection.Parents also value in idual mentoring following training to assist them to apply the principles of the practice framework to the everyday support for decision-making they provide to their adult son or daughter.Training in support practice should be accompanied by in idual mentoring or other strategies to assist parents of adults with intellectual disabilities to discuss and solve the difficult issues they confront in providing decision support more aligned to the rights paradigm.
Aging ... A Continuing Challenge
Publisher: Wiley
Date: 03-2010
Reflections on doing inclusive research in the making life good in the community study
Publisher: Informa UK Limited
Date: 06-2010
DOI: 10.3109/13668251003716425
Abstract: The involvement of people with intellectual disability in research is framed as inclusive, denoting their active participation in its processes. However, questions are raised about ownership and control, genuineness of involvement, and the need for honest accounts to develop practice. Such issues are particularly pressing in Australia, where there is the absence of a strong self-advocacy movement to partner with academics or hold them to account. Action research was used to reflect on and progressively refine the support provided by a research mentor to a co-researcher with intellectual disability employed on a large multimethod study. Accepting the co-researcher's strengths and designing support on the job rather than teaching them to "pass" before venturing out in the field are important in ceding control. Support required for a co-researcher is more than practical and involves developing a relationship that can actively challenge views and foster reflection. Ownership of questions and disseminating of outcomes are h ered by contextual factors such as tender processes, short-term positions, and a failure to acknowledge the support required to present findings.
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
Publisher: Informa UK Limited
Date: 18-11-2020
Quality of practice in supported accommodation services for people with intellectual disabilities: What matters at the organisational level
Publisher: Informa UK Limited
Date: 18-11-2020
Is the National Disability Insurance Scheme Taking Account of People with Intellectual Disabilities?
Publisher: Informa UK Limited
Date: 03-07-2014
A case study of an intentional friendship between a volunteer and adult with severe intellectual disability: “My life is a lot richer!”
Publisher: Informa UK Limited
Date: 17-08-2017
'The biggest thing is trying to live for two people': Spousal experiences of supporting decision-making participation for partners with TBI
Publisher: Informa UK Limited
Date: 04-2015
DOI: 10.3109/02699052.2015.1004753
Abstract: To understand how the spouses of in iduals with severe TBI experience the process of supporting their partners with decision-making. This study adopted a constructivist grounded theory approach, with data consisting of in-depth interviews conducted with spouses over a 12-month period. Data were analysed through an iterative process of open and focused coding, identification of emergent categories and exploration of relationships between categories. Participants were four spouses of in iduals with severe TBI (with moderate-severe disability). Spouses had shared committed relationships (marriage or domestic partnerships) for at least 4 years at initial interview. Three spouses were in relationships that had commenced following injury. Two main themes emerged from the data. The first identified the saliency of the relational space in which decision-making took place. The second revealed the complex nature of decision-making within the spousal relationship. Spouses experience decision-making as a complex multi-stage process underpinned by a number of relational factors. Increased understanding of this process can guide health professionals in their provision of support for couples in exploring decision-making participation after injury.
Enabling mainstream systems to be more inclusive and responsive to people with disabilities: Hospital encounters of adults with cognitive disabilities. Report for the National Disability Research and Development Agenda
Publisher: La Trobe
Date: 2018
DOI: 10.26181/20760376
The pearl in the middle: A case study of social interactions in an individual with a severe intellectual disability
Publisher: Informa UK Limited
Date: 09-2010
DOI: 10.3109/13668250.2010.501026
Abstract: People with severe intellectual disability have limited communication skills, small social networks, and may experience isolation. Little is known about how interactions occur with social network members and the role of social support. An adult with a severe intellectual disability was observed in her daily environments. Her social network members were identified and interviewed. Data were analysed using a grounded theory approach. Fourteen social network members were identified. People with severe intellectual disability interact in different ways, which may not be understood by network members or conform to normative expectations. Still, network members experienced enjoyment, personal satisfaction, and love in their interactions. Social interactions with people with severe intellectual disability are challenging. The results point to the benefits of a focus on learning that makes interactions meaningful for each in idual, sharing that information with network members, and considering ways to increase interactions and extend the social network.
Supporting decision-making of adults with cognitive disabilities: The role of Law Reform Agencies – Recommendations, rationales and influence
Publisher: Elsevier BV
Date: 11-2018
DOI: 10.1016/J.IJLP.2018.09.001
Abstract: Article 12 of the UNCRPD on equal recognition before the law, places an obligation on member states to 'provide access by persons with disabilities to the support they may require in exercising their legal capacity'. This has resulted in an increased focus on the concept and practice of supported decision-making, as opposed to substitute decision-making, for those with cognitive disabilities. To date, translation of this concept into law has been limited. However, Law Reform Agencies, tasked with reviewing legal decision-making schemes are increasingly recommending incorporation of legally recognised supported decision-making measures. This paper identifies the contribution of Law Reform Agencies' reports and recommendations to the evolving body of knowledge in relation to supported decision-making. In particular, it analyses the rationales for recommendations favouring the introduction of forms of legally recognised supported decision-making and the types of legal models of supported decision-making being recommended by Law Reform Agencies.
Conceptualizing inclusive research with people with intellectual disability
Publisher: Wiley
Date: 04-12-2014
DOI: 10.1111/JAR.12083
Abstract: The inclusion of people with intellectual disability in research is a common requirement of research funding. Little conceptual clarity is available to guide the conduct of inclusive research or judge its fidelity, there is minimal evidence of its impact, and questions remain about its feasibility and rigour. A comprehensive review of the peer reviewed literature and key texts was undertaken to more clearly conceptualize inclusive research and identify the issues associated with ways of approaching it. Three approaches to inclusive research were identified: advisory, leading and controlling, and collaborative group. Using the literature and the authors' own experience, each approach is illustrated and discussed. A clearer conceptual framework is developed to guide researchers and administrators as they consider inclusive research and its feasibility to particular research questions. A strong self-advocacy movement is identified as one of the conditions necessary for inclusive research to flourish. Organisations including government that fund research about people with an intellectual disability in the UK and Australia say it is important that people with an intellectual disability are involved in planning and doing research that is about them this is called inclusive research. Some people have written about what they have done but not enough has been written and shared about the different ways of doing inclusive research. The people who wrote this paper looked at all the literature about ways of doing inclusive research and reflected on the way they had worked with a group of self advocates in writing about their history. There are three main ways of doing inclusive research (i) Where people with an intellectual disability give advice about what to do (ii) Where people with an intellectual disability lead and control research (iii) Where people with and without intellectual disability work together as a group with different jobs based on their different interests and skills. In the past there has been an idea that there is only one way to do inclusive research. This paper talks about the advantages and disadvantages of different ways of doing inclusive research, and when you might choose one way rather than another.
A collaborative group method of inclusive research
Publisher: Wiley
Date: 04-12-2014
DOI: 10.1111/JAR.12082
Abstract: Funding bodies in Australia and the United Kingdom require research on issues that affect the lives of people with intellectual disability to be inclusive. Debate continues about the nature and benefits of inclusive research, which has become an umbrella term encompassing a broad spectrum of approaches. This study proposes one method of inclusive research, the 'collaborative group' approach. It examines the processes used to conduct a study involving academics and self-advocates, presenting findings derived from an inductive analysis of field note data, interview and meeting transcripts. Five components are identified: shared and distinct purposes of participants equally valued, shared involvement and distinct contributions equally valued, flexible, adapted research methods, working as a group with trusting relationships and dispersed power, and scaffolding for inclusion. This collaborative group method potentially results in better research than either academics or self-advocates could achieve alone and has multiple knowledge outcomes with differing accessibility and complexity. When people with an intellectual disability and researchers from universities or other organisations do research together it is called inclusive research. People have worked together on research for a long time but there are still some questions about why we should do it and the best way to do it. This paper talks about one way of doing inclusive research that the people who wrote the paper call 'collaborative group approach'. They did a big project with a group of people with an intellectual disability and talked and thought a lot about what they were doing. What they found out. There are five parts to working this way (i) Having some of the same and some different reasons for doing the research (ii) Doing some things together and doing some things apart (iii) Being able to change things as you go so people can do what they want to do and are good at. (iv) Knowing each other well and being able to work together equally. (v) Thinking about the way you work all the time to make sure people are doing what they are good at and what they want to do. If people work this way it might lead to better research and understanding about the lives of people with an intellectual disability.
The National Disability Insurance Scheme in an Urban Context: Opportunities and Challenges for Australian Cities
Publisher: Informa UK Limited
Date: 14-06-2019
Commentary by Christine Bigby on “Reducing the Inequality of Luck: Keynote Address at the 2015 Australasian Society for Intellectual Disability National Conference” (Bonyhady, 2016)*
Publisher: Informa UK Limited
Date: 02-07-2016
Another minority group: Use of aged care day programs and community leisure services by older people with lifelong disability
Publisher: Wiley
Date: 03-2005
Advancing a research agenda for bridging ageing and disability
Publisher: Ubiquity Press, Ltd.
Date: 16-11-2012
DOI: 10.5334/IJIC.1085
Programs and practices to support community participation of people with intellectual disabilities
Publisher: Springer International Publishing
Date: 2022
The Toronto declaration on bridging knowledge, policy and practice in aging and disability
Publisher: Ubiquity Press, Ltd.
Date: 16-11-2012
DOI: 10.5334/IJIC.1086
Enabling Risk: Putting Positives First
Publisher: Informa UK Limited
Date: 02-01-2018
Reflecting on change and continuity for people with intellectual disabilities: epilogue for Kew Cottages
Publisher: Informa UK Limited
Date: 03-07-2023
Moving towards midlife care as negotiated family business: Accounts of people with intellectual disabilities and their families Just getting along with their lives together
Publisher: Informa UK Limited
Date: 30-08-2007
Reflections on being a first generation self-advocate: belonging, social connections, and doing things that matter
Publisher: Informa UK Limited
Date: 13-04-2015
‘More people talk to you when you have a dog’ – dogs as catalysts for social inclusion of people with intellectual disabilities
Publisher: Wiley
Date: 19-08-2018
DOI: 10.1111/JIR.12538
Abstract: Research has shown Australian group homes, and supported living options, fail to support people with intellectual disabilities (IDs) to develop social connections. This pilot study evaluates the effectiveness of a visiting dog walking program to facilitate encounters with other community members. Sixteen adults with IDs were assigned to one of two groups, matched on key characteristics. Group 1 had 14, 1-hour outings in the community with a dog and their handler Group 2 had 14 outings with a handler alone, followed by an additional five outings with a handler and a dog. Within and between group differences were analysed according to number of encounters when a dog was present and absent. Qualitative data provided insights into the nature of these encounters. The number of encounters was significantly higher when a dog was present than when participants went out into the community with a handler alone. This pattern was reflected in the qualitative data, which also suggested the presence of a dog helped to break social norms about speaking to strangers and discourage disrespect towards people with IDs. A dog walking program has the potential to encourage convivial encounters, which in the long term could be catalysts to help people with IDs build social connections in their communities this should be further explored.
“The Scheme Was Designed with a Very Different Idea in Mind of Who a Disabled Person Is”: The National Disability Insurance Scheme and People with Intellectual Disability
Publisher: Springer Singapore
Date: 2021
Shifting responsibilities: The patterns of formal service use by older people with intellectual disability in Victoria
Publisher: Informa UK Limited
Date: 1998
The role of practice leadership in active support: impact of practice leaders’ presence in supported accommodation services
Publisher: Informa UK Limited
Date: 19-09-2018
Editorial note
Publisher: Informa UK Limited
Date: 03-2011
A five-country comparative review of accommodation support policies for older people with intellectual disability
Publisher: Wiley
Date: 03-2010
Reflecting on 60 years of Australian Social Work
Publisher: Informa UK Limited
Date: 12-2007
National Disability Insurance Scheme plan decision-making: or when tailor- made case planning met Taylorism & the algorithms?
Publisher: La Trobe
Date: 2019
When parents relinquish care: Informal support networks of older people with intellectual disability
Publisher: Wiley
Date: 12-1997
We Were More Radical back then: Victoria's First Self-Advocacy Organisation for People with Intellectual Disability
Publisher: Australian and New Zealand Society of the History of Medicine
Date: 2016
DOI: 10.5401/HEALTHHIST.18.1.0042
Abstract: This article is concerned with exploring the historical development of Reinforce, the oldest self-advocacy organisation for people with intellectual disability in Victoria. In particular, it considers how governmental indifference, as well as ad hoc funding and support, has hindered the growth of the organisation and, more generally, the growth of the self-advocacy movement in Victoria. By obtaining a deeper understanding of the input from the policy makers, professionals, and supporters working in the field of intellectual disability, we can begin to comprehend some of the reasons for the comparatively slow development of self-advocacy in this country.
Australian Social Work Research on Ageing and Aged Care: A Scoping Review
Publisher: SAGE Publications
Date: 14-06-2016
Abstract: Little is known about the quantity, nature and range of Australian social work research on ageing and aged care. This scoping review involved a comprehensive search of seven online bibliographic databases. The review identified 108 peer-reviewed journal articles, published between January 2007 and June 2014, that reported Australian social work research on ageing and aged care. The average number of authors per paper was 2.10 with most social work researchers co-authoring papers with non-social workers. The main topics of research focus were health and rehabilitation, elder abuse, asset management, community services and caregiving, housing and residential aged care, and ageing with an intellectual disability. The findings highlight the contribution social work researchers make to multidisciplinary gerontological research, and to understanding the lived experiences of older people and the provision of services. However, they also point to the relative paucity of research focusing on direct social work practice with older people, and the little evidence of the participation of older people and carers in the design and delivery of research. The findings indicate the need for capacity-building strategies, such as developing networks of Australian social work researchers on ageing and aged care, to improve research outputs in this area.
Supported Decision Making: Understanding How its Conceptual Link to Legal Capacity is Influencing the Development of Practice
Publisher: Informa UK Limited
Date: 02-01-2014
Social Roles and Informal Support Networks in Mid Life and Beyond
Publisher: Wiley
Date: 07-06-2008
Patterns of group home culture in organisations supporting people with intellectual disabilities: A cross-sectional study
Publisher: Informa UK Limited
Date: 17-08-2022
Editorial: Diversity and ageing
Publisher: Informa UK Limited
Date: 06-2009
Supported decision making
Publisher: Springer International Publishing
Date: 2020
Parental strategies that support adults with intellectual disabilities to explore decision preferences, constraints and consequences
Publisher: Informa UK Limited
Date: 04-08-2022
Hospital experiences of older people with intellectual disability: Responses of group home staff and family members
Publisher: Informa UK Limited
Date: 10-08-2010
DOI: 10.3109/13668250.2010.491071
Abstract: This study reports on the hospitalisation experiences of older adults with intellectual disability living in group homes. Grounded dimensional analysis was used to guide data collection and analysis. Group home residents were tracked prospectively over a 3-year period. Interviews were conducted with family, group home, and aged care staff and managers, and some residents. Findings highlighted the difficulty people with intellectual disability experience in hospital settings. Findings revealed extensive strategies undertaken by family members and group home staff to improve hospital experiences. Ageing of the family members and staffing implications for group homes complicated efforts to improve hospital experiences. The current absence of systems to accommodate the special needs of people with intellectual disability in hospital settings has significant consequences for group homes, family members, hospital staff, and residents. Most hospital systems appear to be poorly designed to care for this vulnerable population.
Experiences of supporting people with Down syndrome and Alzheimer's disease in aged care and family environments
Publisher: Informa UK Limited
Date: 03-01-2012
DOI: 10.3109/13668250.2011.645473
Abstract: Research addressing the experiences of families of adults with Down syndrome and Alzheimer's disease in seeking diagnosis and gaining support is limited. The aim of this study was to gain a greater understanding of these processes by exploring the experiences of families and carers in supporting people with Down syndrome and Alzheimer's disease who had lived most or all of their lives with family. Three detailed case studies were created from multiple data sources, and then analysed thematically. Families of adults with Down syndrome experienced stress and confusion as they negotiated a service system poorly equipped to meet their needs and professionals more focused on longstanding disability than the recent diagnosis of Alzheimer's disease. Such overshadowing led to mismanagement by services. This research advances understandings of the support needs of people with Down syndrome and Alzheimer's disease and their families. It exposes gaps in the service system.
Confidence of group home staff in supporting the health needs of older residents with intellectual disability
Publisher: Informa UK Limited
Date: 06-01-2016
Being a valuable contributor on the frontline: The self‐perception of staff in group homes for people with intellectual disability
Publisher: Wiley
Date: 04-10-2018
DOI: 10.1111/JAR.12418
Abstract: Group home frontline staff have a critical role in implementing service policies, yet research typically examines implementation issues from an organisational perspective. The aim of this study was to explore the self‐perception of frontline staff about their role in group homes for people with intellectual disability. Constructivist grounded theory methodology guided the study. Data were collected with frontline staff through semistructured interviews and participant observations. Coding and sorting methods were used to analyse participants’ self‐perception. Frontline staff felt they were valuable contributors who knew the service setting and residents well. Despite this staff felt powerless in their roles, excluded from organisational dialogue, stressed and exhausted. Frontline staff have critical insight into service implementation although disability service organisations may limit their capacity to contribute to this. Further action could explore new ways to better nurture frontline staff engagement in organisational dialogue.
Maximizing community inclusion through mainstream communication services for adults with severe disabilities
Publisher: Informa UK Limited
Date: 2009
People with intellectual disability and the digitization of services
Publisher: Elsevier BV
Date: 02-2021
Evaluation of the independent review of a major life decision affecting people who have an intellectual disability
Publisher: Informa UK Limited
Date: 06-2004
The challenges and benefits of using participant observation to understand the social interaction of adults with intellectual disabilities
Publisher: Informa UK Limited
Date: 12-2011
DOI: 10.3109/07434618.2011.587831
Abstract: Observation methods have been used in both communication and interaction research. Qualitative interpretive approaches are rare where participants have complex communication needs. Issues for qualitative researchers utilizing participant observation research methods have been well documented, but a similar discussion is lacking where the participants are people with severe intellectual disability. Observational data collected from a study of adults with severe intellectual disabilities in interaction with their social network members were scrutinized to identify challenges and benefits of participant observation. Challenges identified include the consent process, changing roles, and researcher intrusion. The use of participant observation with adults with severe intellectual disabilities allows for unexpected insights and provides context and credence for other lines of inquiry. Participant observation may be useful with other groups of people.
Later life for adults with intellectual disability: A time of opportunity and vulnerability
Publisher: Informa UK Limited
Date: 1997
The home environments and occupational engagement of people with intellectual disabilities in supported living
Publisher: SAGE Publications
Date: 03-05-2019
When is a house a home?
Publisher: Mark Allen Group
Date: 02-08-2006
DOI: 10.12968/IJTR.2006.13.8.340
Abstract: Housing consists of a ersity of places of human habitation, whether houses or apartments, owned or rented, permanent or temporary, fixed or mobile. They become homes when they have occupants who give them meaning, through gaining shelter from them, styling them to their own tastes, and performing valued occupational roles within them (Heywood, 2006).
The La Trobe Support for Decision Making Practice Framework Learning Resource
Publisher: La Trobe
Date: 2019
Staff perspectives on paperwork in group homes for people with intellectual disability
Publisher: Informa UK Limited
Date: 15-10-2018
Why are conferences sometimes about us, without us?
Publisher: Informa UK Limited
Date: 12-2006
Paperwork in group homes for people with intellectual disability
Publisher: Informa UK Limited
Date: 28-04-2015
Remembering Jim Mansell OBITUARY
Publisher: Informa UK Limited
Date: 30-07-2012
Advancing Social Work Research in Australia: Experienced Researcher Perspectives
Publisher: Informa UK Limited
Date: 21-09-2023
Shifts in the model of service delivery in intellectual disability in Victoria
Publisher: Informa UK Limited
Date: 2001
Preparing Manuscripts that Report Qualitative Research: Avoiding Common Pitfalls and Illegitimate Questions
Publisher: Informa UK Limited
Date: 19-06-2015
Culture in better group homes for people with intellectual disability at severe levels
Publisher: American Association on Intellectual and Developmental Disabilities (AAIDD)
Date: 10-2016
DOI: 10.1352/1934-9556-54.5.316
Abstract: Building on cultural dimensions of underperforming group homes this study analyses culture in better performing services. In depth qualitative case studies were conducted in 3 better group homes using participant observation and interviews. The culture in these homes, reflected in patterns of staff practice and talk, as well as artefacts differed from that found in underperforming services. Formal power holders were undisputed leaders, their values aligned with those of other staff and the organization, responsibility for practice quality was shared enabling teamwork, staff perceived their purpose as “making the life each person wants it to be,” working practices were person centered, and new ideas and outsiders were embraced. The culture was characterized as coherent, respectful, “enabling” for residents, and “motivating” for staff. Though it is unclear whether good group homes have a similar culture to better ones the insights from this study provide knowledge to guide service development and evaluation.
An effective program design to support older workers with intellectual disability to participate individually in community groups
Publisher: Wiley
Date: 06-2014
DOI: 10.1111/JPPI.12080
The temporalities of supported decision-making by people with cognitive disability
Publisher: Informa UK Limited
Date: 03-10-2020
Measuring practice leadership in supported accommodation services for people with intellectual disability: Comparing staff-rated and observational measures
Publisher: Informa UK Limited
Date: 23-11-2018
Paternalism to empowerment: all in the eye of the beholder?
Publisher: Informa UK Limited
Date: 12-07-2023
Mainstream, Inclusionary, and Convivial Places: Locating Encounters Between People with and Without Intellectual Disabilities
Publisher: Informa UK Limited
Date: 04-2016
Progressive resistance training in young people with Prader-Willi syndrome: Protocol for a randomised trial (PRESTO)
Publisher: BMJ
Date: 12-2022
DOI: 10.1136/BMJOPEN-2021-060306
Abstract: Preliminary evidence suggests that progressive resistance training may be beneficial for people with Prader-Willi Syndrome (PWS), a rare genetic condition that results in muscle weakness and low muscle tone.To establish whether community-based progressive resistance training is effective in improving the muscle strength of people with PWS to determine cost-effectiveness and, to complete a process evaluation assessing intervention fidelity, exploring mechanisms of impact, understanding participant experiences and identifying contextual factors affecting implementation. A multisite, randomised controlled trial will be completed. Sixty participants with PWS will be randomised to receive either progressive resistance training (experimental) or non-progressive exercise (placebo control). Participants will be aged 13 to 60 years, be able to follow simple instructions in English and have no contraindications to performing progressive resistance training. The experimental group will complete progressive resistance training two times weekly for 24 weeks supervised by an exercise professional at a community gym. The control group will receive all aspects of the intervention except progressive overload. Outcomes will be assessed at week 25 (primary endpoint) and week 52 by a blinded assessor. The primary outcome is muscle strength assessed using one repetition maximum for upper limb and lower limb. Secondary outcomes are muscle mass, functional strength, physical activity, community participation, health-related quality of life and behaviour. Health economic analysis will evaluate cost-effectiveness. Process evaluation will assess safety and intervention fidelity, investigate mechanism of impact, explore participant experiences and identify contextual factors affecting implementation. Data collection commenced in February 2020 and will conclude in September 2023. Ethical approval was obtained from The Royal Children’s Hospital Human Research Ethics Committee (HREC/50874/RCHM-2019) under the National Mutual Acceptance initiative. Research governance approvals were obtained from five clinical sites. Results will be disseminated through published manuscripts, conference presentations, public seminars and practical resources for stakeholder groups. ACTRN12620000416998 Australian and New Zealand Clinical Trial Registry.
Observing practice leadership in intellectual and developmental disability services
Publisher: Wiley
Date: 08-06-2015
DOI: 10.1111/JIR.12208
Abstract: Improving staff performance is an issue in services for people with intellectual disability. Practice leadership, where the front line leader of a staff team focuses on service user outcomes in everything they do and provides coaching, modeling, supervision and organisation to the team, has been identified as important in improving staff performance. To date this finding is based only on self-report measures. This paper describes and tests an observational measure of practice leadership based on an interview with the front-line manager, a review of paperwork and observations in 58 disability services in Australia. The measure showed good internal consistency and acceptable inter-rater reliability. Practice leadership was associated with staff practice and outcomes for service users. The observed measure of practice leadership appears to be a useful tool for assessing whether leadership within a service promotes enabling and empowering support by staff. It was found to discriminate higher and lower performing services in terms of active support. The measure had good reliability and validity although some further testing is required to give a complete picture of the possible uses and reliability of the measure. The measure is potentially useful in contexts of both research and service development. The confirmation of previous findings from self-report measures that practice leadership is related to the quality of staff practice and outcomes for service users has implications for policy and practice in terms of the training of managers and structures for organisational management.
Factors associated with increases over time in the quality of Active Support in supported accommodation services for people with intellectual disabilities: A multi-level model
Publisher: Elsevier BV
Date: 11-2019
DOI: 10.1016/J.RIDD.2019.103477
Abstract: Disability support organisations have embraced Active Support, but it has proved difficult to embed in services. This study aimed to identify the factors associated with increases over time in the quality of Active Support. Data were collected on the predicted variable of the quality of Active Support, and predictor variables of service user, staff and service characteristics, including practice leadership, and composition and size of services from 51 services in 8 organisations over 2-7 time points. Data were analysed using multi-level modelling. There was significant linear change in Active Support scores (group mean centered at the organisational level) over time. In iduals with lower support needs received better Active Support and those with higher support needs experienced greater increases over time. Stronger practice leadership and more staff with training in Active Support were significant predictors of the quality of Active Support. Larger services with seven or more in iduals and where there was a very heterogeneous mix of in iduals were associated with lower quality of support. Ensuring strong practice leadership, and staff training in Active Support that emphasises the principle of adapting support to each in idual's level of ability and preferences are key to delivering high levels of Active Support.
A model of processes that underpin positive relationships for adults with severe intellectual disability
Publisher: Informa UK Limited
Date: 21-11-2012
DOI: 10.3109/13668250.2012.732221
Abstract: Relationships develop through social interaction and assist with participation and inclusion. Little is known about how relationships develop between people with severe intellectual disability who have limited communication and others. Interactions were observed between 6 adults with severe intellectual disability and paid workers or family members with whom those adults had positive relationships. Workers and family members were interviewed. The data were analysed through a grounded theory approach. Data analysis led to the identification of 5 processes that underpin positive relationships: recognising in iduality, sharing the moment, connecting, feeling good, and sharing the message. A relationship model with clearly identified processes and sub-elements provides a framework for teaching others how to have positive relationships with people with severe intellectual disability. The model could be applied in training to support relationships between workers and people with a disability and more widely with other community members.
Ageing people with a lifelong disability: Challenges for the aged care and disability sectors
Publisher: Informa UK Limited
Date: 2002
Cycles of Adaptive Strategies Over the Life Course
Publisher: Informa UK Limited
Date: 24-06-2014
DOI: 10.1080/01634372.2013.875972
Abstract: An increasing number of Australia's ageing population are aging with long-term physical impairments. This study explored the life experiences of this group using a qualitative approach. In-depth interviews were conducted with 10 disabled Victorians, aged between 51 and 84 years, and an inductive thematic analysis undertaken. A relationship was found between the adaptive strategies that participants developed as they moved through life phases and the impairment stages. The implications of the emergence of a cyclical process of adaptation across the life course. and particularly in respect of aging, delivery of aged-care services and social workers in this sector are discussed.
Written out of history: Invisible women in intellectual disability social work
Publisher: Informa UK Limited
Date: 03-2010
Parental Substitutes: The Role of Siblings in the Lives of Older People with Intellectual Disability
Publisher: Informa UK Limited
Date: 06-01-1998
Handbook on Ageing with Disability
Publisher: Routledge
Date: 02-02-2021
Factors that predict good Active Support in services for people with intellectual disabilities: A multilevel model
Publisher: Wiley
Date: 14-10-2020
DOI: 10.1111/JAR.12675
Introduction to the Australasian Society for Intellectual Disability Position Statement on Intellectual Disability and Complex Support Needs
Publisher: Informa UK Limited
Date: 02-01-2019
Erratum: Maximising community inclusion through mainstream communication services for adults with severe disabilities (International Journal of Speech-Language Pathology 11: 3)
Publisher: Informa UK Limited
Date: 2009
Supporting Students with Invisible Disabilities: A Scoping Review of Postsecondary Education for Students with Mental Illness or an Acquired Brain Injury
Publisher: Informa UK Limited
Date: 03-03-2016
Editorial
Publisher: Informa UK Limited
Date: 02-01-2011
Comparing costs and outcomes of supported living with group homes in Australia
Publisher: Informa UK Limited
Date: 03-2018
Realising ‘will, preferences and rights’: reconciling differences on best practice support for decision-making?
Publisher: Informa UK Limited
Date: 02-10-2019
A demographic analysis of older people with intellectual disability registered with community services victoria
Publisher: Informa UK Limited
Date: 1994
Becoming a decision-making supporter for someone with acquired cognitive disability following traumatic brain injury
Publisher: Informa UK Limited
Date: 15-10-2016
Movement on shifting sands: deinstitutionalisation and people with intellectual disability in Australia, 1974–2014
Publisher: Informa UK Limited
Date: 09-02-2015
How frontline staff manage paperwork in group homes for people with intellectual disability: Implications for practice
Publisher: Wiley
Date: 08-05-2018
DOI: 10.1111/JAR.12450
Abstract: Paperwork is a key tool that transforms organizational intentions into actions in group homes, although prescriptive procedures may limit how frontline staff use it in practice. The aim of this study was to explore how frontline staff use paperwork in group homes for people with intellectual disability and identify practice implications. Constructivist grounded theory methodology guided the research. Data collection included semi-structured interviews and participant observations. Coding, comparison and sorting methods were adopted to analyse how staff used paperwork. Staff followed organizational paperwork rules when they aligned with their resident-focused approach to work. When they perceived rules to misalign with this approach, they managed paperwork by adjusting the time and place of completion, managing content, creating alternative tools and refusing completion. Staff purposefully managed paperwork rather than simply following procedures. Disability service organizations could develop flexible paperwork procedures and include frontline perspectives in paperwork development.
Development and psychometric evaluation of the Group Home Culture Scale
Publisher: Wiley
Date: 23-12-2020
DOI: 10.1111/JAR.12693
I won't be around forever: Understanding the decision-making experiences of adults with severe TBI and their parents
Publisher: Informa UK Limited
Date: 09-03-2016
DOI: 10.1080/09602011.2015.1019519
Abstract: There is growing recognition of the right of all in iduals, including those with cognitive impairment, to make decisions about their own lives. However, little is known about how the process of decision making is experienced after severe traumatic brain injury (TBI). This study used constructivist grounded theory to explore processes used by adults with severe TBI and their parents in making decisions about life after injury. Data consisted of 18 in idual, in-depth interviews with four dyads (consisting of an in idual with severe TBI and his or her parent). The overlying construct emerging from the data was a process of reimagining the future, which influenced how participants approached and participated in making decisions. In line with this construct, two central themes described processes of joint decision making within parent-adult child relationships after severe TBI over time: (1) making decisions with parental support, and (2) reducing parental involvement. These findings emphasise the complexity of supporting decision making after injury, and illustrate that both parents and their adult children with TBI use explicit and implicit strategies to facilitate increased participation in making decisions. This study also underscores the need for brain injury clinicians to consider the needs of parents who find themselves in this role.
Creating opportunities for convivial encounters for people with intellectual disabilities: “It looks like an accident”
Publisher: Informa UK Limited
Date: 10-09-2020
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