LIVING WITH DISABILITY RESEARCH CENTRE

ANNUAL 2019 REPORT LIVING WITH DISABILITY 2020 RESEARCH CENTRE LIVING WITH DISABILITY RESEARCH CENTRE ANNUAL REPORT 20219-2020 1 2 Contents

Message from the Dean...... 4 Message from the Director...... 6 About the Living with Disability Research Centre...... 8 Personnel...... 10 Research themes...... 12 Effectiveness of disability services...... 13 Building the evidence base for participation...... 17 Enabling mainstream services to be more inclusive....21 Research translation & resources for practice: Training resources...... 24 Notable achievements ...... 26 Courses...... 27 Seminar series...... 29 Events...... 32 Research outputs & impacts: HDR graduations...... 34 Funded projects...... 36 Publications...... 38 Presentations...... 42 Partners...... 45

LIVING WITH DISABILITY RESEARCH CENTRE ANNUAL REPORT 20219-2020 3 Message from the Dean

The Research Centre’s focus on Everyone involved in the work of research designed to improve the the Research Centre should be effectiveness of disability services, congratulated for its continued to improve access by people with excellent work. I look forward to disability to decision making support continuing to support the Centre about service provision, and to assist and witnessing the contribution of services to be more accessible and the Living with Disability Research responsive demonstrates La Trobe Centre in producing research with real University’s commitment to research impact and meaning for individuals excellence and community impact. and communities. The research of the Centre is Professor Russell Hoye consciously multi-disciplinary Dean, School of Allied Health, Human in nature in order to tackle the Services and Sport, La Trobe University complexity of disability service provision; involving health policy, a myriad of funding agencies, community groups, commercial service providers, expertise across The work of the Living with specific disabilities and clients that receive services. The research Disability Research Centre therefore draws on expertise across is increasingly important in La Trobe’s many campuses including the context of the systemic the La Trobe Rural Health School, and the School of Allied Health, change being driven by Human Services and Sport and brings the roll out of the National together a range of expertise and Disability Insurance diverse disciplines to its research Scheme (NDIS). The projects. Research Centre facilitates The Living with Disability Research Centre continues to secure significant unique exchanges between research funding to support its many industry partners and research projects and publishes in academic researchers, and some of the world’s best research journals. It also supports aspiring is an exemplar for how researchers by providing higher to translate research into degree research students with practice that can improve access to world class supervisors, a regular seminar series to support the lives of individuals and collaboration and sharing of new their communities. ideas, and opportunities to work with a range of industry and community partners.

4 LA TROBE UNIVERSITY LIVING WITH DISABILITY RESEARCH CENTRE ANNUAL REPORT 20219-2020 5 Message from the Director

For families, usual support or respite and advocacy groups and built new services were suspended and service connections with organisations such providers scrambled to secure as HELP Enterprises in Qld, Rocky Bay access to protective equipment, in WA, Dundaloo in NSW and Focus in reorganise rosters, interpret ever . changing operational directives and Universities continue to be deeply find strategies to enable the people affected by COVID-19, and in July they support to be socially connected 2020, Professor Jacinta Douglas took and engaged digitally. Despite the the opportunity to become an Emerita exigencies of 2020, anecdotal stories Professor. This esteemed position is suggest that some relationships awarded only to scholars who have were strengthened, new digital made significant contributions to literacy skills were acquired and that the University as a whole, and who the disability sector met these new have made internationally recognised challenges creatively. contributions to knowledge in their At the Living with Disability Research, field of research. When post COVID-19 the year 2020 was like no other. The normal returns, we will invite you pandemic brought a halt to all our to a seminar that will highlight the This report covers the years research fieldwork, and in doing so difference that Jacinta’s research has freed up time for writing and the made to the field of living well with 2019 and 2020. Over the refinement of research tools. In the acquired brain injury and celebrate past two years, most of us week before lockdown in March her many contributions during 31 have experienced major 2020 we finished filming at Unission years as an academic at La Trobe Services and spent much of the year University. Nevertheless, Jacinta disruptions to our everyday developing the recently launched has not gone far. She continues to lives due to the global training resources for Frontline supervise PhD students and to work COVID-19 pandemic. But Practice Leaders. COVID 19 also closely with researchers at the Living provided us with the opportunity with Disability Research Centre. An as a digitally connected to move our monthly Living with added bonus of her shift to Emeritus academic living alone Disability Research Centre Research status has been a deepening of with lots of space, I can Seminar Series online and in doing our partnership with the Summer so quadruple our audience, which Foundation, where she has taken only begin to imagine now includes service providers and the opportunity to consult with the what 2020 was like for academics from across Australia Foundation on their research program. people with intellectual and the world. On a personal note, I would like to thank every member I also had the opportunity to finish of the Research Centre for their disabilities, particularly the Routledge Handbook on Aging those living in shared dedication to the work we do here at and Disability, which I co-edited with the Living with Disability Research supported accommodation, Professor Michelle Putnam, from Centre and for their collegiality during Simmons University, Boston, and the past two years. Thank you also as day programs closed, which was published in early 2021. employment was to Professor Russell Hoye, who as During this time too, we made oral Head of School of Allied Health, suspended, and months and written submissions to the Human Services and Sport has been passed without visits from Royal Commission into Violence, an unflagging ally. Finally, thanks to friends or family. Abuse, Neglect and Exploitation of our partners in the disability sector People with Disability and the Joint for your continuing support for our Standing Committee on The National research and your commitment to Disability Insurance Scheme, which using research to improve the lives of were cited in subsequent reports of people with cognitive disabilities. these bodies. We have continued Professor Chris Bigby, Director to our longstanding partnerships Living with Disability Research Centre with disability service providers

6 LA TROBE UNIVERSITY The Honourable John Brumby AO, Chancellor, presenting the citation in recognition and celebration of Jacinta Douglas’ position as Emerita Professor at La Trobe University.

LIVING WITH DISABILITY RESEARCH CENTRE ANNUAL REPORT 20219-2020 7 About the Living with Disability Research Centre

Mission total, the Research Centre partners the Advisory Committee comprised in different ways with more than 40 four internal members from La Trobe The Living with Disability Research organisations to design, conduct and University and four external members Centre is a leading Research Centre disseminate research. from organisations in the disability for social research into the lives and sector. experiences of people living with Our research is funded by competitive cognitive disability in Australia. It has grants from the Australian Research Internal members: a national and international reputation Council, the National Health and • Centre Director – Professor for delivering high quality research Medical Research Council, and other Christine Bigby industry and government funding outcomes. • Pro Vice-Chancellor (College of bodies. The Summer Foundation co- SHE) – Professor Rob Pike Unique among Research Centres in funds the Summer Foundation Chair, Australia is our focus on the social Living Well with Brain Injury, held by • Dean, School of Allied Health, inclusion and participation of people Em. Professor Jacinta Douglas and Human Services and Sport – with cognitive disabilities, in particular the research program associated with Professor Russell Hoye those with intellectual disability or this chair. As well as having dedicated • Staff member of the Centre – acquired brain injury. Our Research research staff, the Research Centre Em. Professor Jacinta Douglas Centre has an outstanding track works with staff from across La • Research Fellow, Living with record of delivering rigorous, high Trobe University, giving our Research quality research and for translating Disability Research Centre – Centre a strong multi-disciplinary Dr William Crisp research findings into formats perspective. and resources that are accessible External members: to mainstream service providers Governance (from organisations within the sector) and other stakeholders across the The activities of the Research • Daniel Leighton – NDIS disability sector. Centre are overseen by an Executive • Dr Christine Fyffe – Consultant Committee comprising the Director, Aims and Objectives • Dr Di Winkler – Summer Foundation Professor Christine Bigby, Em. The aim of the Living with Disability Professor Jacinta Douglas, and • Dr Jane Tracy – Centre for Research Centre is to improve the Professor Teresa Iacono. Developmental Disability Health social inclusion and participation Victoria The Director of the Living with of people with cognitive disability Disability Research Centre and the • Rod Carracher – Yooralla through research, education, and Executive Committee are supported knowledge transfer and to strengthen by an Advisory Committee. the evidence base that informs practice and policy throughout the The role of the Advisory Committee disability sector. To achieve this is to: aim, our Research Centre conducts • Advise on policy and strategy to research across three broad and meet the aims of the Centre interconnected themes: • Advise on the administration of the • Effectiveness of disability services Centre • Building the evidence base for • Advise and assist in reporting on the community participation and management of Centre resources inclusion • Identify potential new sources of • Enabling mainstream services to be funding for the Centre more inclusive • Receive and endorse the Annual How We Work Report of the Centre, and submit it to the Academic Board through the To ensure our research is grounded Provost (College of SHE) and the in the real-world challenges of turning Deputy Vice-Chancellor (Research policy visions into changed life and Industry Engagement) experiences for people with cognitive disabilities, we work in collaboration During 2019 and 2020, members of with disability service and advocacy organisations across the sector. In

8 LA TROBE UNIVERSITY LIVING WITH DISABILITY RESEARCH CENTRE ANNUAL REPORT 20219-2020 9 Personnel

Executive Committee Dr Jane Tracy – Adjunct Associate Professor Christine Bigby (Director) Professor Em. Professor Jacinta Douglas Dr Di Winkler – Adjunct Associate Professor Professor Teresa Iacono Associated La Trobe University Staff Administrative Staff Dr Tal Araten-Bergman – Social Work Ms Melanie Hayes Dr Kerryn Bagley – La Trobe Rural Staff Research Fellows Health School Dr Sian Anderson Dr Anoo Bhopti – Occupational Therapy Dr Ana Garcia-Melgar Dr Pam Kappelides – Sport & Tourism Dr David Henderson Dr Darren O’Donovan – Law Dr Lincoln Humphreys Professor Christine Bigby Dr Robyn O’Halloran – Speech Ms Rebecca Leeson Pathology Dr Elizabeth Smith Professor Nora Shields – Dr William Crisp Physiotherapy Research Officers and Casual Staff Dr Jo Spong – La Trobe Rural Health School Dr Sandy Barry Dr Ruth Stuckey – Public Health Ms Jane Bowden-Dodd Ms Michelle Collins Higher Degree by Research Students Ms Lauren De Losa Amy Ford Ms Chantelle Hutchinson Yeptain Leung Ms Talia Lipschitz Kristy Logan Dr Bronwyn Moorhouse Jenna MacNab Ms Tessa-May Zirnsak Jade McEwen Ms Yuki Wakamatsu Gail Ritchie Emerita Professor Jacinta Douglas Adjuncts Bojana Sarkic Cara Schofield Dr Glenda Bishop – Adjunct Research Fellow Charity Sims-Jenkins Dr Em Bould - Adjunct Research Joanna Shoreland Fellow Kellie Stagg Dr Mark Brown – Adjunct Research Megan Topping Fellow Rahila Ummer Christian Professor Lauren Clark - Adjunct Elizabeth Williams Professor Kangwei Xun Dr Jennifer Clegg – Adjunct Professor (UK) Higher Degree students completed Dr Stacy Clifford Simplican – Adjunct in 2019 Associate Professor (USA) Kathleen Fitt, PhD Professor Ellie Fossey – Adjunct Margaret Mealings, PhD Professor Teresa Iacono Professor Margaret Pozzebon, PhD Dr Chris Fyffe – Adjunct Professor Claire Quillam, PhD Dr Hilary Johnson – Adjunct Associate Professor Higher Degree students completed in 2020 Dr George Taleporos – Adjunct Senior Research Fellow Kate D’Cruz, PhD Professor Magnus Tideman – Adjunct Professor (Sweden)

10 LA TROBE UNIVERSITY Living with Disability Research Centre staff 2020

LIVING WITH DISABILITY RESEARCH CENTRE ANNUAL REPORT 20219-2020 11 Research Themes

The Living with Disability Research Centre conducts research that can help improve practices, programs and policies that support the social inclusion of people with cognitive disabilities. It is organised into three Themes. Each theme has several programs of research which encompass various projects. Essentially, our research is concerned with building a robust evidence base for the disability sector and the broader community to address the complex and multifaceted problems facing people with cognitive disability, their families, and carers. Our research is interdisciplinary and translational, and it aims to capitalise on our extensive partnerships throughout the disability sector.

12 LA TROBE UNIVERSITY Theme 1: Effectiveness of Disability Services

Research in this theme aims to improve the design and delivery of specialist disability support services. The most important program has been measuring and evaluating the quality of support in supported accommodation services for people with intellectual disabilities. Since 2009 we have been conducting research to identify the most significant factors associated with good quality staff support in such services. We have published a significant body of work about staff practice, including the challenges of implementing Active Support, the nature and impact of Practice Leadership, and the impact of culture, organisational structures and values of senior managers. All publications can be found on our website. See for instance: Report Active Support.pdf, articles-reports, C Bigby/publications. We have also developed the Group Home Culture Scale, a valid and reliable measure of culture in group homes, which is being used in Germany and the UK. DOI: 10.1111/jar.12693. More recently in partnership with the Summer Foundation this program has expanded to include research about new NDIS funded Specialist Disability Accommodation.

LIVING WITH DISABILITY RESEARCH CENTRE ANNUAL REPORT 20219-2020 13 Theme 1: Effectiveness of Disability Services Selected Projects

Project Title: accommodation services for people Project Title: with intellectual disabilities, which Living the good life: outlines findings from the study. Active Support, Embedding Active Support The summary report highlights the Practice Leadership and and Practice Leadership in significance of practice leadership organisational culture in to the quality of Active Support and supported accommodation identifies the importance of key supported accommodation services organisational factors associated services for people with with the values and actions of senior intellectual disabilities: A Research Team: Professor Christine leaders and the structuring of practice Bigby, Professor Teresa Iacono, leadership. These factors are pivotal longitudinal study Professor Julie Beadle-Brown, Dr to delivering good Active Support Research Team: Professor Christine Emma Bould, Dr Lincoln Humphreys, to address poor and variable quality Jane Bowden-Dodd Bigby, Dr Lincoln Humphreys, Jane support and therefore improving Bowden-Dodd Project Aim: Led by Professor Bigby, the quality of life of people with this study commenced in 2009 intellectual disabilities in services. Project Aim: The overarching aim of this project is to improve the and concluded in 2019. It is the The findings from this study provide quality of frontline staff practices largest study about Active Support the first rigorous evidence about the and practice leadership in services in Australia, and it was funded by factors that predict the delivery of and thus the quality of life of people an ARC Linkage Grant and Industry good Active Support and delivers with intellectual disabilities using Partners. The study was essentially a blueprint of the design features those services. The project builds concerned with understanding the that disability service organisations on an ARC Linkage study that individual, service and organisational should incorporate in order to provide identified the factors that predicted factors necessary to embed Active good quality support to people with good Active Support in supported Support in services and thus to intellectual disabilities. These findings accommodation services. See: deliver higher quality staff support to also provide a guide to families and Report Active Support.pdf. This people with intellectual disabilities. people with disability about what project continues the longitudinal to look for in good services, to the Every year, data collection included and multi organisational approach NDIA about what should be funded observations about the quality of the original ARC Linkage study, to ensure good quality support, and of Active Support in services, the but it widens the focus to explore to the NDIS Quality and Safeguarding strength of Practice Leadership, the impact of culture, teamwork Commission about what it should be and an array of other data. By 2017, and other organisational features monitoring. three data sets were compiled that have an impact on the quality about the quality of Active Support: Funding: Australian Research Council of support. The project is funded (1) data from a sample of the (Linkage Grant) by industry partners, who also gain same 51 services for periods of access to an annual independent between 2-7 years; (2) data about Partners: annecto, Aruma, Bayley report on the quality of support in a total of 134 different services House, CARA, Civic, Sydney, their services. Data are collected between 2009-2017; and (3) data Endeavour Foundation, GenU, Golden annually from a sample of services in about 71 services collected in 2017 City Support Services, Greystanes each participating organisation, and included organisational data from Disability Services, Help Enterprises, include observations of the quality interviews with senior managers and Identitywa, Jewish Care, Melba of staff practice, and of the strength organisational documents from 14 Support Services, Unisson Disability of Practice Leadership, completion organisations. Services, Yooralla of the Group Home Culture Scale by staff, and interviews with senior In 2019 we released a summary Date: 2009-2018 report, Enabling engagement and managers. Data collection was inclusion: Organisational factors paused during 2020 due to COVID-19 that embed Active Support in restrictions and will recommence in March 2021.

14 LA TROBE UNIVERSITY Partners and Funding: annecto, with intellectual disabilities. The PHD Projects: Dundaloo Services, Focus first online training resource from Individualised Support Services, this project on Frontline Practice Jade McEwen GenU, Golden City Support Services, Leadership will be launched in Quality systems or quality services? Help Enterprises, Identitywa, Jewish February 2021 and others will follow Exploring how service quality is Care, Oak Possibility, Rocky Bay, in the latter half of the year. and could be measured across the Unisson Disability Services, Yooralla. See: Frontline Practice Leadership disability sector Date: 2018-2022 Funding: NDIS, Quality and Gail Ritchie Project Title: Safeguards Commission Keeping people with an intellectual Date: 2019-2022 disability safe: A case study of sexual Identifying quality: abuse Resources for delivering Project Title: Megan Topping and monitoring quality of Culture and quality in group A grounded theory study of the quality evidence-informed practice of paid disability support for adults home services with acquired neurological disability Research Team: Professor Christine Research Team: Dr Lincoln Bigby, Professor Teresa Iacono, Dr Kangwei Xun Lincoln Humphreys, Dr Tal Araten- Humphreys, Professor Christine Bigby Services for older people with Bergman, Dr David Henderson, Dr Project Aim: This study aims intellectual disabilities in Hong Kong Werner Vogels, Charity Sims-Jenkins to enhance understanding of Project Aim: This project aims organisational culture in supported to develop resources to build accommodation services for people NDIS service providers’ capacity with intellectual disabilities. High to deliver high quality evidence- scores on some subscales of the informed practice to people with Group Home Culture Scale (GHCS) intellectual disabilities in supported are predictive of better quality of life accommodation services. Essentially, outcomes for the people supported. the project is concerned with This study will use the GHCS to embedding practices that support measure the culture in group homes people with intellectual disabilities to and other types of supported exercise choice and control, and to accommodation services at one be engaged and active participants in disability organisation in Victoria and their own lives. The project draws on explore further the different cultures ten years of practice quality research that may coexist in services with in supported accommodation an organisation and relationships services and aims to increase the between culture and quality of life capacity of NDIS providers to deliver outcomes. The project was delayed high quality evidence-informed due to COVID-19 and data collection practice. We will develop a new will commence in early 2021. training program on Frontline Practice Partners and Funding: Melba Support Leadership, update an online resource Services outlining the key tenets of Active Support, develop a new easy to use Date: 2019-2022 Tool for Observing Practice, and produce Guides on what makes a difference to service quality tailored for organisations, families and people

LIVING WITH DISABILITY RESEARCH CENTRE ANNUAL REPORT 20219-2020 15 16 LA TROBE UNIVERSITY Theme 2: Building the evidence base for community participation and inclusion

Participation in communities and in decision making about one’s own life are key principles of the United Nations Convention on the Rights of People with Disabilities. Research in this theme falls into two programs. One program is about supported decision making and the other is about strategies to enable participation in community groups, sport, and physical activity. Disability reform has generated imperatives to develop supported decision making options for people with cognitive disabilities that respect their right to participate in decision making, give primacy to their will and preference, and provide mechanisms that safeguard against undue influence by supporters. Professors Bigby and Douglas are leading a program of research that aims to build an evidence base about supported decision making practice. The La Trobe Support for Decision Making Practice Framework DOI: 10.1080/09638288.2018.1498546, and associated training materials supportfordecisionmakingresource. com.au, were published in 2018. Since then, various projects have explored the effectiveness of the Framework in building the capacity of decision supporters. Professor Nora Shields leads a program of research about the participation of people with intellectual disabilities in physical activity. This includes work with specific groups such as people with Down syndrome, the Fitskills program, and people with Prader Willi syndrome, the Presto trial. A third program is focussed more broadly on community participation and includes the M-Com Connect study with people with acquired brain injury. This study is in its final stages.

LIVING WITH DISABILITY RESEARCH CENTRE ANNUAL REPORT 20219-2020 17 Theme 2: Building the evidence base for community participation and inclusion Selected Projects

Project Title: conferences and three interlinked Project Title: papers were presented in session 3 Support for decision at the conference of the Australian Evaluation the making: Effective decision Guardianship and Administration implementation of the making support for people Council in March 2019. La Trobe Support for with cognitive disabilities Findings: We have demonstrated Decision Making Practice the validity and the sensitivity to Framework by Queensland Research Team: Professor Christine change of the DSQ as a tool for Bigby, Em. Professor Jacinta measuring changes in supporters’ Public Trustee Douglas, Em. Professor Terry Carney strategies. This will provide a key Research Team: Professor Christine (University of Sydney), Dr Shih-Nhing means for tracking the extent to Bigby, Em. Professor Jacinta Douglas Then (Queensland University of which supporters’ strategies reflect Technology), Dr Ilan Wiesel (University the elements of effective decision Project Aim: The Queensland Public of ), Dr Elizabeth Smith support practice and is aligned with Trustee (QPT) resolved to adopt the supported decision making principles. Project Aim: This project is now in its La Trobe Support for Decision Making final phrase. It aimed to 1) understand We have demonstrated the efficacy Practice Framework for use by its the relevance of the evidence based of the La Trobe Support for Decision frontline and supervisory staff in mid La Trobe Support for Decision Making Framework and found it to be 2019. This project has supported Making Practice Framework to a useful and relevant tool for parents the training unit to adapt the existing decision supporters and capture their of adults with cognitive disabilities training to the context of the QPT experience of using it, 2) assess the to build their capacity for decision and it is evaluating the impact of impact of training in the Framework making support. the training and it’s value from the perspectives of staff. Data will be on capacity of supporters to enable As part of the project we have also collected from staff pre and post the person to participate in decision explored further the issues that training through surveys completed making and use processes of parents grapple with in providing by staff which include the Decision effective support, and 3) understand support and the strategies they Support Questionnaire, and semi more about the processes of decision use, and reviewed the evidence structured interviews with staff. support. that emerged from the series of The study was conducted across pilot support for decision making Findings: The project is still in 3 States, Vic, NSW and QLD and programs between 2010- 2015. And progress, but early findings suggest recruited 83 decision support dyads, we have analysed NDIS planning the Framework was successfully comprising a person with either mechanisms and the concepts adapted to the QPT context and intellectual disability or acquired brain embedded in ‘will rights and that frontline staff found it useful injury and a regular supporter, as well preferences’. Published papers from and shifts occurred in their practice as 6 supporters of people with severe the study can be found below. following the training. intellectual disabilities. Supporters Partners: Endeavour, Melbourne Funding: Queensland Public Trustee were randomly selected to be trained City Mission, Inclusion Melbourne, and mentored in the Framework, and Summer Foundation, Victorian Date: 2019-2021 all participants interviewed at regular Office of the Public Advocate, intervals over a 12-month period NSW Department of Family and about their experiences of providing Community Services (FaCS), NSW or receiving support. A measure Office of the Public Guardian, NSW of decision support, the Decision Trustee and Guardian, Queensland Support Questionnaire (DSQ), was Public Advocate, Queensland Mental developed to measure changes in Health Commission, Queensland decision support strategies. Public Trustee, Queensland Office of the Public Guardian. During 2019 and 2020, initial findings from the Support for decision Funding: ARC Linkage Grant making project were presented at Date: 2015-2021 various national and international

18 LA TROBE UNIVERSITY Project Title: for decision making were collected PHD Projects: prior to and following training using Building capability to measures including the Decision Yeptain Leung support client decision Support Questionnaire. Pitch, resonance, and their making contributions to listener perceptions of Findings: Both the measures speaker’s gender and the qualitative data from the Research Team: Em. Professor mentoring showed training in the Jenna MacNab Jacinta Douglas, Professor Christine Framework had a significant and Bigby Supported decision making and measurable positive impact on the guardianship practice Project Aim: As part of implementing participants’ support for decision the new Service Model Framework, making practice. Their confidence Bojana Sarkic the Transport Accident Commission increased significantly, and they Peripheral auditory dysfunction (TAC) engaged the Living with showed improved use of supported following traumatic brain injury: A Disability Research Centre to build decision making steps and principles consecutive cohort study the capability of independence and a significant increase in their use claims employees to apply the La of strategies that clearly supported Cara Schofield Trobe Support for Decision Making the client’s right to participate in Using focussed ethnography to Practice Framework. The project decision making. They also showed a understand the social context of aimed to translate existing evidence substantial increase in self-reflective exercising in a community gym for on the Support for Decision Making practice. The TAC is planning to people with Prader-Willi syndrome Practice Framework by training a roll out training in the Framework small cohort of independence claims more widely for staff across the Joanna Shoreland employees to apply the Framework organisation and will work with La Profiling cognitive-communication in their interactions with clients and Trobe to develop further examples difficulties in older adults following assess the impact of training on their of applying the Framework in this new onset traumatic brain injury (TBI) capability to be effective supporters specific context. A report of this of decision making. project is available from the University Charity Sims-Jenkins Repository. See: Report_Capability.pdf Nine independence claims How self-advocates’ stories change employees participated in two face Funding: Transport Accident frontline staff’s perceptions of service to face training sessions about the Commission (TAC) user self-determination Framework followed by individual mentoring to assist them in applying Date: 2019-2021 Kellie Stagg it to their day to day work. Data Communication impairment and the about confidence and strategies working alliance in stroke rehabilitation

LIVING WITH DISABILITY RESEARCH CENTRE ANNUAL REPORT 20219-2020 19 20 LA TROBE UNIVERSITY Theme 3: Enabling mainstream services to be more inclusive

Despite the implementation of the National Disability Insurance Scheme, mainstream services will continue to provide the vast majority of services required by people with cognitive disabilities. Inclusion of people with cognitive disabilities in the mainstream is at the heart of human rights and disability policy. This theme of our research is concerned with finding ways to make mainstream services more accessible and responsible to people with disabilities. This theme includes programs of research about on Education, Health Systems and Cities. Professor Teresa Iacono and her team of disability researchers from the Rural Health School have worked in collaboration with schools and parents to develop an evidence- based tool that identified the types of reasonable adjustments necessary to for inclusive education. A cross- school group has been funded by an NDIS grant to translate findings from our research on quality care in hospitals into a set of resources for hospital staff, disability support services and families of people with cognitive disabilities. Meanwhile, Professor Bigby is working with long term collaboration partner, Dr Ilan Wiesel, School of Geography, on an ARC Linkage grant examining the accessibility of cities and mainstream services for people with intellectual disabilities.

LIVING WITH DISABILITY RESEARCH CENTRE ANNUAL REPORT 20219-2020 21 Theme 3: Enabling mainstream services to be more inclusive Selected Projects

Project Title: Health, Golden City implemented to progressively build Support Services and Yooralla. The staff competencies. The manuscript Increasing the quality of multimedia company, Maitree, that for publication of this research project hospital care for people will assist preparing videos and other is in preparation. with cognitive disabilities media, has been engaged. Funding: Building Healthy Funding: NDIS Information, Linkages Communities Research Focus Area Research Team: Professor Teresa and Capacity Building (La Trobe University) Iacono, Em. Professor Jacinta Date: 2020-2023 Date: 2019 Douglas, Professor Christine Bigby, Dr Jo Spong, Dr Ana Garcia Melgar, Dr Project Title: William Crisp Project Title: Building healthy Project Aim: The aim of this project Exploring the current is to translate research evidence preparedness and training communities with a social from a previous study conducted by needs of a regional rural model of disability: A the Living with Disability Research randomised controlled trial Centre, Enabling mainstream services public mental health to be more inclusive. The project workforce for the provision Research Team: Professor Teresa is concerned with understanding of care to people with Iacono, Dr Jo Spong, Dr Kerryn Bagley, what is necessary to ensure quality intellectual disabilities and Dr Nerida Hyett, Assoc. Professor hospital care for people with Carol McKinstry, Dr Ana Garcia- cognitive disabilities in Victoria. This mental illness Melgar, Dr Oriane Landry, Professor project brings together regional Research Team: Dr Jo Spong, Michael Arthur-Kelly (University of and metropolitan hospitals and Professor Teresa Iacono, Dr Janelle Newcastle) disability services. Key activities Weise (UNSW), Professor Julian include the trial and evaluation of Project Aim: Within the social model Trollor (UNSW), Lisa Spong (Bendigo multi-media training for patients, of disability, inclusion occurs when Health), Tim Lenten (Bendigo Health) families, disability support workers reasonable adjustments are made and hospital staff to improve hospital Project Aim: This project was to enable access to mainstream care and the experiences of adults developed in response to a national processes and structures to address with cognitive disabilities. This work is recommendation to upskill the mental needs arising from a person’s timely in light of the particular health health workforce in the provision impairment. Expectations that vulnerabilities of people with life-long of care to people with intellectual schools will implement reasonable or long-term disabilities in the current disabilities and mental ill-health. adjustments for students with COVID-19 environment. The aim of the project was to identify disabilities are embedded within the current preparedness, training legislation and policy. The aim of Work, to this point, has focused on needs, resources and supports of a this study was to test the premise further developing a framework for regional rural public mental health that embedding the social model of good quality hospital care developed workforce in the provision of care and disability into training, which also from the research findings of our services to people with intellectual addresses the provision of real and completed study into hospital disability and mental ill-health. Data authentic learning opportunities, encounters of adults with cognitive was collected in 2019 via survey, will improve the quality of disability. This framework and data interviews and a forum and is reasonable adjustments designed from the study are being used to providing insight from participating by stakeholders in the education develop content for the multi-media mental health service staff regarding of students with disabilities. The web-based resources for hospital attitudes, confidence, education key component of this project is and disability sectors, and families and experience, as well as barriers the development of a Reasonable and others who support people and enablers in caring for a person Adjustments for Inclusive Education with cognitive disabilities through with intellectual disabilities and rating scale and using it to test the their hospital journeys. A Reference mental ill-health. This information efficacy of an educational intervention Committee has been formed with can assist in the future design of a on designing supports for school members from our participating targeted mental health workforce students with disabilities. organisations of Eastern Health, development plan which can be

22 LA TROBE UNIVERSITY A Randomised Control Trial was of the intervention in terms of implemented and data collection improving the quality of reasonable was completed in 2019. Thirty-one adjustments. Preliminary evidence participants selected across school shows that some participants had staff, allied health professionals difficulty with designing them, and providing supports to school variation in the extent to which they students, and parents of children addressed five key dimensions with disabilities attending primary assessed using the LT-RAIE: schools were randomly allocated authenticity, support for real learning, to intervention and control (no incorporating learner strengths, intervention) groups. Scenarios learner agency, and social inclusion. were prepared about students with The findings from this this research varied disabilities and education are currently being prepared for needs. Participants responded publication. The online modules from to each scenario by suggesting this study and the student scenarios reasonable adjustments during are now freely available as a resource interviews conducted pre- and post- for parents and professionals intervention (two student scenarios), working towards the educational and at 2-month follow-up (a third inclusion of students with disability. scenario was added to evaluate reasonableadjustmentsinschools.org. generalisation). The intervention au/ group completed online modules. Funding: Building Healthy Reasonable adjustments described Communities Research Focus Area by participants were rated by two (La Trobe University) independent assessors who had been trained to use the newly developed Date: 2018 and trialled tool, the La Trobe Reasonable Adjustments for Inclusive PHD Projects: Education (LT-RAIE). Kristy Logan Approximately 170 reasonable adjustments were generated at each Aided enhanced milieu teaching to of the pre- and post-intervention data increase symbolic communication collection points, and about 250 at in children with autism spectrum the 2-month follow-up. Analyses of disorder these data are enabling evaluation

LIVING WITH DISABILITY RESEARCH CENTRE ANNUAL REPORT 20219-2020 23 Research Translation & Resources for Practice

At the end of 2019, the New in 2019 Figures: 74,520 page views in 2019. 88,400 page views in 2020. Living with Disability The La Trobe Support for Research Centre added Decision Making Practice Supporting Inclusion the La Trobe Support for Framework Learning The purpose of this resource is Decision Making Practice Resource to create a space where disability Framework Learning support workers can think about what This resource was launched in social inclusion means for people Resource to its growing October 2019. It was developed to with intellectual disabilities and learn suite of online training guide supporters of people with or refresh some useful tools and cognitive disabilities through the resources. The Research strategies to support people with process of supporting them to intellectual disabilities in ways that Centre developed and make a decision. Decision making will promote their social inclusion. supports four online is a fundamental human right and supportinginclusion.weebly.com/ people with cognitive disabilities training resources for are likely to need ongoing support Figures: 9,935 page views in 2019. direct support workers with making decisions. The La Trobe 10,975 page views in 2020. and frontline practice Support for Decision Making Practice Framework is the first evidenced Enabling Risk: Putting leaders. All of these training based guide to supporting people Positives First with cognitive disabilities to make resources are free, and This resource was launched in late decisions. It can be used by frontline they are used widely across 2018. It was developed for disability managers, disability support workers, support workers. Enabling people to the disability sector. A team leaders, clinicians, guardians, take risks is an integral part of disability friends, spouses, parents and other fifth resource, for frontline support work and it is important that family members to enable people managers, will be launched practice leaders, frontline managers, with cognitive disabilities to exercise and senior managers are aware of in 2021. choice and control in their own lives the essentials of enabling risk – as supportfordecisionmakingresource. outlined in this resource – as they com.au/ play a significant role in creating the Figures: 1,682 page views October right environment for support workers 2019 – December 2019. 4,492 page to put risk enablement into practice. views in 2020. enablingriskresource.com.au Online Training Resources Figures: 681 page views in 2019. 12,400 page views in 2020. Person-centred Active Support: Every Moment has Potential This resource provides an introduction to Active Support – a way of working that enables everyone, no matter their level of intellectual or physical disability, to make choices and participate in meaningful activities and social relationships. The resource was developed in 2015 for disability support staff. As part of our Identifying Quality project, we are updating this resource. The new, updated version of this resources will be launched in the second half of 2021. activesupportresource.net.au/

24 LA TROBE UNIVERSITY Other Resources Forthcoming online training Administrative Appeals resources Tribunal (AAT) Digest Frontline Practice Leadership This digest is prepared by the Living This resource is currently under with Disability Research Centre. It construction, as part of Identifying summarises a curated selection of Quality Project, and will be launched at Administrative Appeals Tribunal (AAT) the beginning of 2021. The Frontline decisions and offers an overview of Practice Leadership resource is an some important themes arising from online learning program for frontline those decisions about the NDIS. By managers and other staff responsible exploring recent AAT decisions, the for guiding the practice of disability Digest aims to capture the way the support workers. Support workers Tribunal is dealing with some common need to receive good Frontline issues raised in appeals against NDIS Practice Leadership to deliver quality decisions. Active Support to the people they By drawing out the implications of support. By completing this program, AAT decisions and interpreting the support workers will learn the tasks provisions of the scheme, the digest and skills essential to Frontline helps to inform scheme participants, Practice Leadership. The program supporters, advocates and those covers topics such as the purpose of involved in its administration. The Frontline Practice Leadership, how primary intended audience of the Digest Frontline Practice Leadership should is people who have some familiarity be organised, the five tasks of Frontline with the scheme, including Partners in Practice Leadership, and the skills Community organisations, advocacy needed to be a good Frontline Practice organisations, peak bodies and disability Leader. service providers. practiceleadershipresource.com.au aat-ndis-decision-digest

LIVING WITH DISABILITY RESEARCH CENTRE ANNUAL REPORT 20219-2020 25 Notable Achievements

Distinguished Achievement 2020 Fetal Alcohol Award for Research Syndrome Disorder Professor Bigby’s sustained and Research Australia – enduring contribution to research in Mid-Career Researcher the field of intellectual disability was acknowledged at the 2019 IASSIDD Award World Congress in Glasgow. Bigby In 2020, Dr Kerryn Bagley, was was presented with the Distinguished awarded the FASD Research Australia Achievement Award for Research. Mid-Career Research Award. Dr The award recognises a significant Bagley, a specialist in fetal alcohol contribution to the sciences related spectrum disorders (FASD), is a to intellectual and developmental researcher at the Living with Disability disabilities through a sustained and Research Centre and lecturer in social important contribution over time. work, social policy and rural health Bigby said she was honoured to in the La Trobe Rural Health School, receive an award that acknowledged Bendigo. Her research investigates her body of work aimed at enhancing health and human service sector the inclusion of people with responses to FASD. Dr Bagley helped intellectual disability in society. to develop one of the first best- practice FASD diagnostic clinics in Disability Worker Australia and was the inaugural co- Registration Board of chair of the Australian FASD Clinical Victoria Network. In 2019, Professor Christine Bigby Life Membership – Speech was appointed to the Disability Pathology Australia – Worker Registration Board of Associate Professor Victoria. The Registration Board is responsible for setting the standards (Honorary) Hillary Johnson for registration and accreditation of In 2020, long time Living with approved programs of study. The Disability Research Centre member Board works closely with the Victorian and Honorary Associate Professor Disability Worker Regulation Scheme Hillary Johnson was awarded life to oversee the regulation of registered membership of Speech Pathology and unregistered disability workers Australia. The award is the highest in Victoria. The Regulation Scheme public professional honour the applies to all disability workers in association awards to its members. Victoria. Registration is voluntary for Over the course of her career, Hillary disability workers and the conduct of Johnson has been an exemplary registered workers will be regulated. clinician, advocate and researcher. Her work has been driven by a firm commitment to improving the lives of people with the most severe disabilities and it is wonderful to see her sustained and multifaceted contribution to the profession - and to people with disabilities - being recognised in such an award.

26 LA TROBE UNIVERSITY Disability Practice Online Courses

In 2019, the Living with The first two years have been a We look forward to welcoming resounding success and in spite successive cohorts of students. Disability Research of the interruptions wrought by the Flexible full time, part time or single Centre and La Trobe COVID-19 pandemic, enrolments subject options are available. Study University launched its have steadily increased across all online at a time that suits you. Enrol subjects. The feedback from our 2019 in 1, 4, 8 or 11 subjects in Disability online Disability Practice and 2020 students has been really Practice. The table below shows the Courses. The flexible, positive and our course coordinator, different pathways to a Graduate fully online courses draw Sian Anderson, received the 2019 Certificate or a Master of Disability Vice Chancellor’s Teaching Award Practice. For specific information on our Centre’s research for her work with the team teaching about each subject, visit: and practice knowledge social policy. latrobe.edu.au/courses/disability and are taught by leading “The course has really opened researchers from the my eyes to a lot of issues. I’ve been a support worker for years Centre. Our Disability and I’ve never read any research Practice Courses cater to a or thought about some of diverse range professionals those great big issues we have who are currently involved covered”. Student, 2020. in, or entering, the disability sector and offer contemporary knowledge and skills to enhance professional practice.

Course Structure Exit Options

Year One (8 subjects) Graduate Certificate in Disability Practice The Enhancing Support Translating (choose any 4 subjects from Year One) Contemporary Social Planning with Evidence into 6 months full time or part time equivalent* Disability Inclusion People with Disability Landscape** Disabilities Practice Semester 1

Ethical Issues Disability and Advocacy in Understanding Graduate Diploma in Disability Practice in Disability the Law Contemporary Complex and Practice Disability Challenging (all 8 subjects from Year One) Practice Needs 1 year full time or part time equivalent Semester 2

Year Two (3 subjects) Foundations Scoping Research Thesis of Graduate Reviews in Master of Disability Practice Research Disability (all 11 subjects from Year One and Year Two) Research 1.5 years full time or part time equivalent Semester 1

* Graduate Certificate in Disability Practice is able to be completed in 6 months full time provided subjects are chosen within the same semester. For those wishing to choose subjects from different semesters, the completion time would be longer. ** The Contemporary Disability Landscape is offered in both Semester 1 and Semester 2 of Year One.

LIVING WITH DISABILITY RESEARCH CENTRE ANNUAL REPORT 20219-2020 27 28 LA TROBE UNIVERSITY Research Seminar Series 2019-2020

During 2019, eleven seminars were held with invited guests (local and international), higher degree by research students and staff from the Living with Disability Research Centre. And despite the significant interruptions wrought by the global pandemic in 2020, the Research Centre continued to run its monthly research seminar series largely uninterrupted.

The Research Seminar Series has always attracted a good audience and since it pivoted to an online format in early 2020, our audience has grown significantly. The seminars attract a wide range of service providers from across the disability sector, as well as academics and professionals each month.

The seminars showcase the research of the Centre, our higher degree by research students and our collaborative work with researchers at other universities. For more information about our Research Seminar Series, you can subscribe to our mailing list. You can also access recordings or PowerPoint slides from all of our seminars on our website. latrobe.edu.au/lids/resources/ conferences

LIVING WITH DISABILITY RESEARCH CENTRE ANNUAL REPORT 20219-2020 29 Research Seminar Series 2019

Presenter Topic Dr David Henderson, Research Fellow, Living with ‘The boy tied to a stake’: The Tipping campaign and reform at Disability Research Centre, La Trobe University the Kew Cottages in the 1950s February Gail Ritchie, PhD Candidate, Living with Disability A case study of a perpetrator: Abuse in a service for young Research Centre, La Trobe University people with intellectual disabilities March Dr Nicola Grove, Tizard Centre, University of Kent (UK) Story webs: Anecdotal narrative and the fabric of being Em. Professor Pavla Millar, School of Global, Urban “ of entitlement has ended”: NDIS and path and Social Studies, RMIT dependence April Dr Sian Anderson, Lecturer, Living with Disability Writing the script: The overt and hidden contradictions of Research Centre, La Trobe University supporters’ work in independent self-advocacy groups

Jade McEwan, PhD Candidate, Living with Disability What is good service quality? Frontline day service staff’s Research Centre, La Trobe University perspectives on what it is and how it should be measured May Tessa May-Zirnsak, PhD Candidate, Gender, Sexuality Understanding systemic and cultural violence against the and Diversity Studies, La Trobe University cognitive disability community: A new theoretical model Dr Tal Araten-Bergman, Lecturer, Social Work, La Trobe Models for forming and supporting circles of support for University people with intellectual disabilities June Dr Robyn O’Halloran, Lecturer, Speech Pathology, Why don’t hospitals measure the patient experience of people La Trobe University with communication disabilities?

Dr Ilan Wiesel, Lecturer, School of Geography, University Finding the mainstream city: The ambiguities of ‘mainstream of Melbourne participation’ by people with intellectual disabilities July Associate Professor Karen Soldatic & Dr Michelle Fitts Sorting myself out of the system: Social sorting & the disability Western Sydney University & James Cook University income support system for Indigenous Australians with disabilities Dr Nastaran Doroud, Lecturer, Occupational Therapy, La Recovering through everyday life activities: A participatory Trobe University photovoice study with people experiencing mental health issues August Kellie Stagg, PhD Candidate, Living with Disability Communication impairment and the working alliance in stroke Research Centre, La Trobe University rehabilitation

Professor Christine Bigby, Director, Living with Disability Developing an evidence-based practice framework to guide September Research Centre, La Trobe University support for decision making Dr Elizabeth Smith, Research Fellow, Living with Support for decision making: The rights of people with Disability Research Centre, La Trobe University cognitive disability to decision making support Professor Ellie Fossey, Head of Department, How are consumers involved in mental health education in October Occupational Therapy, Australian and New Zealand? Barriers and facilitators Anne Williams, PhD Candidate, Living with Disability Using e-mental health resources together: A qualitative study Research Centre, La Trobe University of consumer & worker experiences in mental health practices Professor Jacinta Douglas, Summer Foundation Chair, Maximising community connection for people with acquired November Living with Disability Research Centre, La Trobe University brain injury: A multi-component program Rebecca Leeson, Research Fellow, Living with Disability Finding the missing shoe: The effectiveness of M-Com Research Centre, La Trobe University Connect for Suzie Assistant Professor Phyllis Wong, Visiting Scholar, ICF-based practice on staff competency and satisfaction: December Department of Social Work, Chinese University, Hong Kong A pioneer project Dr Mark Feigan, Office of the Public Advocate, Victoria Systemic advocacy: Changing what happens

30 LA TROBE UNIVERSITY Research Seminar Series 2020

Presenter Topic Dr Lincoln Humphreys, Research Fellow, Living with Frontline Practice Leadership: what it is and how to do it Disability Research Centre, La Trobe University February Per Arvidsson, Visiting Scholar, PhD Candidate, Implementing Practice Leadership in a community setting, Malmo University, Sweden examples from Malmo, Sweden

Charity Sims-Jenkins, PhD Candidate, Living with Do warm feelings, rather than negative feelings, obstruct Disability Research Centre, La Trobe University support for self-determination from support workers? March Dr Sian Anderson, Lecturer, Living with Disability Social media responses to evidence presented by researchers Research Centre, La Trobe University to the Disability Royal Commission

Dr Claire Spivakovsky, Senior Lecturer in Criminology, Concerns about ‘risk’ in group homes: When reputational risks University of Melbourne meet OHS concerns and result in restrictive practices May Professor Christine Bigby, Director, Living with Dedifferentiation and people with intellectual disabilities in the Disability Research Centre, La Trobe University Australian National Insurance Scheme

Professor Teresa Iacono, Living with Disability Development of the La Trobe Reasonable Adjustments for Research Centre, La Trobe University Inclusive Education rating scale June Dr Jo Spong, Lecturer, La Trobe Rural Health School, A randomised control trial of shifting perceptions to enhance La Trobe University inclusive school education of students with disabilities

Megan Topping, PhD Candidate, Living with Disability Understanding the factors that influence the quality of paid Research Centre, La Trobe University support for adults with acquired neurological disabilities July Professor Christine Bigby, Director, Living with Factors that influence the quality of staff support for people with Disability Research Centre, La Trobe University intellectual disabilities in supported accommodation services Dr Kate D’Cruz, Lecturer, Occupational Therapy, Understanding the transformative potential of sharing personal La Trobe University stories: A process model of narrative storytelling August Dr David Henderson, Research Fellow, Living with Stories from the Wild West frontier: The NDIS experiences of Disability Research Centre, La Trobe University people with severe and profound intellectual disabilities

Dr Alan Hough, Director, Purpose at Work The NDIS Quality & Safeguarding Scheme in context

September Jade McEwen, PhD Candidate, Living with Disability Administrative compliance or personal outcomes? Exploring Research Centre, La Trobe University service quality of frontline staff in day services

Em. Professor Jacinta Douglas, Summer Foundation Chair, Living well with acquired neurological disability: The things that Living with Disability Research Centre, La Trobe University help, the things that get in the way October Dr Kerryn Bagley, Lecturer, Social Work, La Trobe Rural Perceptions of health and social service professionals of Fetal Health School, La Trobe University Alcohol Spectrum Disorder

Professor Christine Bigby, Director, Living with The La Trobe Support for Decision Making Practice Framework Disability Research Centre, La Trobe University November Em. Professor Jacinta Douglas, Summer Foundation Chair, The La Trobe Support for Decision Making Practice Framework Living with Disability Research Centre, La Trobe University

Daniel Leighton, Strategic Advisor, Intellectual The role of the Strategic Advisor, Intellectual Disability, within Disability, Policy, Advice and Research Division, NDIS the policy setting landscape of the NDIS December Dr Janice Biggs, Branch Manager, Research and The NDIS Research and Evaluation Branch Evaluation, NDIA

Professor Bruce Bonyhady, Director, Melbourne The National Disability Research Partnership (NDRP) Disability Institute Dr Di Winkler, CEO Summer Foundation, and Adjunct The partnership between the Summer Foundation and the Associate Professor, La Trobe University Living with Disability Research Centre

LIVING WITH DISABILITY RESEARCH CENTRE ANNUAL REPORT 20219-2020 31 Other Events

Story webs: Anecdotal Marking claims that matter. narrative and the fabric A workshop with Professor of being. A workshop with Jennifer Clegg (UK) Dr Nicola Grove (UK) In November 2019, Professor Jennifer In March 2019, Dr Nicola Grove Clegg (University of Nottingham, (Tizard Centre, University of Kent, UK) delivered a wonderful, one-day Canterbury) held a one-day workshop workshop: Making claims that matter: at the Living with Disability Research non-behavioural approaches to Centre that explored story webs supporting people with intellectual and the way in which stories are disabilities. The workshop, co- intimately connected to the fabric of hosted by the Living with Disability being. In this fantastic workshop, Dr Research Centre and ASID, was a Grove outlined how human beings great success. More than forty people Professor Jennifer Clegg, spend a lot of their time together from various professions attended University of Nottingham, UK. exchanging stories about their lives the workshop and delved into the and how these so-called “small latest research and practice around stories” can be regarded as critical in attachment and Trauma Informed building a sense of personal identity, care. The workshop explored non- relationships and communities. The behavioural approaches to people workshop illustrated some of the with intellectual disabilities and mechanisms whereby the exchange provided participants opportunities of stories can help to break down to view videos that show how barriers and stigma in the lives of interactions reveal attachment; to people with severe and profound examine instruments that assess intellectual disabilities. emotional development and levels of distress, and to discover new research and practice into attachment and Trauma-Informed Care. Professor Clegg designed and Dr Nicola Grove, Honorary taught the Understanding Complex Senior Lecturer at the and Challenging Needs online module Tizard Centre, University in the La Trobe University Graduate of Kent, UK. Certificate of Disability Practice last year. Her workshop explored some of the material that she covered in the course.

32 LA TROBE UNIVERSITY LIVING WITH DISABILITY RESEARCH CENTRE ANNUAL REPORT 20219-2020 33 Higher Degree by Research Graduations

2019 Margaret Mealings, PhD. Margaret Pozzebon, PhD. Kathleen Fitt, PhD. Participating in education: The spousal experience Encounters with child The student perspective. of primary progressive welfare discourses: Understanding the aphasia Beginning practitioners experiences of students Abstract: Primary Progressive returning to secondary and Aphasia (PPA) is a neurocognitive- working with mothers with degenerative disorder, characterised intellectual disability tertiary education following by early and ongoing decline of Abstract: Both beginning child traumatic brain injury language-communication abilities. and family welfare practitioners Abstract: Participating in education Despite the pivotal role that spouses and mothers with an intellectual following traumatic brain injury (TBI) play in supporting their partner disability experience difficulties provides a pathway for returning to diagnosed with PPA, little is known within the child protection system. important aspects of a student’s about how they deal with and face Beginning practitioners experience pre-injury life. However, ongoing the challenges associated with this high attrition rates in the first year of challenges in supporting students progressive condition. This thesis practice. Mothers with an intellectual persist with variations in access, explores the personal experiences of disability are overrepresented in provision and length of support spouses living with this condition. The applications to remove children from across rehabilitation and educational investigation yielded four published the family home. This thesis explores settings. This thesis explores the papers, and collectively the studies discourses within the child welfare experience of secondary and tertiary revealed the complex interpersonal field and how, when and where students participating in education and relational implications faced by those encountered by beginning following TBI through exploring spouses across the illness trajectory. child welfare practitioners influence themes related to adjustment and This body of research makes a practice when working with mothers wellbeing. Findings suggest that unique contribution to contemporary with an intellectual disability. Findings students’ experiences were unique, PPA literature. The research findings revealed five key discourse themes: with varied timelines and outcomes. also enabled the development of a ecology, bureaucratic processes, However, they shared many critical conceptual model which captured key knowledge, resources and definitions points and the thesis showed that aspects of the spousal experience of of harm/risk. These discourses came moving along the pathway was PPA. It emphasises the importance together as a framework that was not always straightforward. The for clinicians to consider and address implicit in child protection action. The themes arising from this study the relationship consequences of framework provided an explanation provide clinicians and educators living with PPA from the perspective for how beginning practitioners with suggestions for improving of spouses, specifically managing were influenced in terms of their practice and show that students their sense of self in the context of functioning in their own professional need to be supported in complex changing relational connectivity with and personal environments, and process of adjusting and reshaping their partner and social world. These responses to the mother with identity through the use of holistic, research findings have substantial intellectual disability. There is a comprehensive approaches that can potential to inform speech pathology need to consider the supports and be adapted in response to changing therapeutic interventions and knowledge beginning practitioners needs. Using the concept of a approaches to best support spouses require to manage the five elements student journey provides a framework to do the tough work of spousal of the framework when working with to explore broad approaches for caregiving. vulnerable groups, such as mothers supporting a range of academic and Articles: with intellectual disability. non-academic factors influencing Facing the challenges of primary progressive students’ participation over time. aphasia Articles: Students’ perspectives on adjusting to life after traumatic brain injury through participation in study.

34 LA TROBE UNIVERSITY Claire Quillam, PhD. 2020 Group home bureaucrats? Kate D’Cruz, PhD. Understanding how staff Narrative storytelling use paperwork in group following acquired brain homes for people with injury: Creating connections intellectual disability and exchanging wisdom Abstract: Paper tools, the paper or through sharing stories of electronic documents that staff use in doing paperwork, are prominent lived experience in group homes for people with Abstract: Adapting to life following Dr Margaret Pozzebon intellectual disability in Australia. acquired brain injury (ABI) is a (left) with supervisor Paperwork forms a significant part of complex process of adjustment Professor Jacinta Douglas staffs’ work and is expected to serve and community reintegration. While at the La Trobe graduation many functions by disability service narrative storytelling is recognised as ceremony. organisations, including guiding an approach to supporting coherence practice and capturing information following trauma or disruption to the for evaluating service quality. life narrative, there is limited direct Little research has explored staffs’ research into narrative approaches perspectives of their paperwork, in ABI. This thesis explores the although such research could subjective experience of narrative reveal how staff use paperwork and storytelling following ABI. The study offer strategies to support staff to was conducted in the context of a complete paperwork in ways that lead storytelling advocacy program, in to good resident support. This thesis which personal stories are shared explores how staff use paperwork to advocate for the rights of young in group homes for people with people with disabilities residing in intellectual disability. The findings nursing homes. Narrative storytelling Dr Margaret Mealings illustrate how staff draw on their was found to be a humanising (centre) with principal frontline experiences and critical experience and central to this supervisor Professor reflections to manage paperwork finding was the advocacy context Jacinta Douglas and co-supervisor Professor so they can remain focused on of the storytelling, in which sharing John Olver, Medical stories of lived experience held supporting residents, and revealed Director, Rehabilitation, that staffs’ paperwork is complex and meaningful occupational purpose Epworth HealthCare, possibly discretionary in nature. The for the storytellers, and their lived Victor Smorgon Chair of findings suggest paper tools may be experiences were valued. This is the Rehabilitation, Monash somewhat useful for meeting staffs’ first study to investigate the use of University Epworth day-to-day practice requirements, but narrative storytelling for adults with HealthCare at the La Trobe inadequate for capturing information ABI in an advocacy context, and from graduation ceremony. to evaluate service quality. the perspective of both storytellers and facilitators. The findings Articles: How frontline staff manage paperwork in contribute new insights, with practice group homes for people with intellectual recommendations considered in the disability. context of holistic ABI rehabilitation. Being a valuable contributor on the frontline. Articles: Personal narrative approaches in Staff perspectives on paperwork in rehabilitation following traumatic brain injury. group homes for people with intellectual disabilities. Sharing stories of lived experience. Narrative storytelling as both an advocacy tool and therapeutic process.

LIVING WITH DISABILITY RESEARCH CENTRE ANNUAL REPORT 20219-2020 35 Funded Projects

New in 2019 and 2020 Lanin, N., Douglas, J., et al. Early Bigby., C., Iacono, T., Douglas, J., vocation intervention for people Troller, J., Tracy, J, Sheilds, N. Enabling Araten-Bergman, T., Bigby, C. Aging who have experienced a stroke. mainstream systems to be more with intellectual disability. Exploring A randomised pilot trial; Stroke inclusive and responsive to people the impact of the NDIS on service Foundation. with disabilities; National Disability provision; School of Allied Health, Research and Development grants. Human Services and Sport, La Trobe Linehan, C., Araten-Bergman, T., University. Bigby, C., Beadle-Brown J., et al. Bigby, C., O’Donovan, D., Douglas, J. Impact of Covid-19 on individuals Accessible summaries and digest Bigby, C., Douglas, J. Support for with intellectual and developmental of AAT decisions about the NDIS; decision making. Adapting the disabilities and caregivers: Health Brotherhood of St Laurence. La Trobe Support for Decision Research Board, Ireland (COV19- Bigby, C., Tideman, M. After school Making Practice Framework for 2020). the Queensland Public Trustee; job project; National Disability Queensland Public Trustee. Shields, N., Bennell, K., Taylor, N, Rice, Services. L., Markovic, T., Bigby, C., Watts, J., Bigby, C., Crisp, W. V/Line and Bigby, C., Tipping, S. Strategies to Prendergast, L. Improving muscle support people with intellectual passengers with communication strength in young people with difficulties; Scope. disabilities to vote; Victorian Electoral Prader-Willi syndrome; Medical Commission. Bigby, C., Humphreys, L. Measuring Future Fund. culture in supported accommodation Douglas, J. Summer Foundation Smith, E., Bigby, C., Lyons, A., Power, Research Chair. services; Melba Support Services. J. Rainbow me! Inclusion of LGBTQI Bigby, C., Iacono, T., Humphreys, and gender diverse adults with Douglas, J., Bigby, C. Building L., Araten-Bergman, T. Identifying intellectual disability in social and capacity to support client decision quality. Resources for delivering support services; Building Healthy making; Transport Accident and monitoring quality of evidence Communities Research Focus Area, Commission. informed practice; NDIS Quality and La Trobe University. Douglas, J., Bigby, C., Iacono, T. Safeguards Commission. Maximising social connection Bigby, C., Iacono, T., Humphreys, L., Continuing from 2018 and building relationships in the Araten-Bergman, T. Identifying quality. Beadle-Brown, J., Bigby, C., Bradshaw, community: Evaluation of a multi- Quantifying features of organisation J. Uncovering staff culture of good component community connection structures and leadership that quality supported accommodation program (M-ComConnect) for contribute to sustained quality of for people with intellectual people with severe TBI; Institute for Active Support practice in supported disabilities; National Institute for Safety, Compensation and Recovery accommodation services; Lorna Health Research, School for Social Research. Hodgkinson Foundation. Care Research, UK. Iacono, T., McKinstry, C., Keeffe, M., Bigby, C., Sheehan, M., Douglas, Bigby, C. Living the good Life: Hyett, N., Landry, O. Strengthening the J. Promoting equal rights under Embedding Active Support and capacity of mainstream schools to the Victorian Medical Treatment Practice Leadership in supported meet the functioning, developmental, Planning and Decisions Act 2018. accommodation services; Australian educational and psychosocial Supporting the rights of Victorians Research Council (ARC) Linkage Grant needs of children with disability; with cognitive disability; La Trobe and additional industry partners: National Disability Insurance Agency University. Yooralla, annecto, Aruma, Identitywa, - Community Inclusion Capacity Development (CICD) Program. Douglas, J., Bigby, C. Building GenU, Unisson Disability, Jewish Care. capacity to support client decision Bigby, C. Using person centred active Tilbury, C., Bigby, C., Hughes, M., making; Transport Accident support in the community. A study Fisher, M. The production, use and Commission. of the quality of support and service effect of social work research; user outcomes in supported living Australian Research Council (ARC) Iacono, T., Bigby, C., Douglas, D., & Discovery Grant. Spong, J. Increasing hospital access and drop in services; Aruma. and quality of care for people with Bigby, C., Douglas, J. Effective Weisel, I., Gleeson, B., Bigby. C., cognitive disability; National Disability decision making support for people Whitzman, C. The disability inclusive Insurance Scheme – Mainstream with cognitive disability; Australian city; Australian Research Council Capacity Building (MCB) Grant Round Research Council (ARC) Linkage (ARC) Discovery Grant. 2019-202. Grant.

36 LA TROBE UNIVERSITY LIVING WITH DISABILITY RESEARCH CENTRE ANNUAL REPORT 20219-2020 37 Publications 2019

Articles the perspectives of passengers with in rehabilitation following traumatic communication disabilities. Disability brain injury: A synthesis of qualitative Ashley, D., Fossey, E., & Bigby, C. and Rehabilitation, 41(2), 125-132. research. Neuropsychological (2019). The home environments DOI: 10.1080/09638288.2017.1380721 Rehabilitation, 29(7), 985-1004. and occupational engagement of DOI: 10.1080/09602011.2017.1361844 people with intellectual disabilities Bigby, C., Whiteside, M., & Douglas, J. in supported living. British Journal of (2019). Providing support of decision Douglas, J. (2019). Loss of friendship Occupational Therapy. making to adults with intellectual following traumatic brain injury: a model DOI: 10.1177/0308022619843080 disabiulity: Perspectives of family grounded in the experience of adults members and workers in disability with severe injury. Neuropsychological Barry, S., Knox, L., & Douglas, J. support services. Journal of Intellectual Rehabilitation. (2019). ‘Time’s up’: The experience and Developmental Disability, 44(4), DOI: 10.1080/09602011.2019.1574589 of entering residential aged care 396-409. Douglas J., & Bigby, C. (2019). for young people with acquired DOI: 10.3109/13668250.2017.1378873 neurological disorders and their Development of an evidence-based families. Brain Impairment, 20(1), 37- Bigby, C., & Wiesel, I. (2019). Using practice framework to guide decision 48. the concept of encounter to further making support for people with the social inclusion of people with cognitive impairment due to an acquired DOI: 10.1017/BrImp.2018.13 intellectual disabilities: What has been brain injury or intellectual disability. Bigby, C., Bould, E., & Beadle-Brown, learned? Research and Practice in Disability and Rehabilitation. J. (2019). Implementation of Active Intellectual and Developmental Disability, DOI: 10.1080/09638288.2018.1498546 Support over time in Australia. Journal 6(1), 39-51. Douglas, J., Knox, L., De Maio, of Intellectual and Developmental DOI: 10.1080/23297018.2018.1528174 C., Bridge, H., Drummond, M., & Disability, 44(2), 161-173. Bould, E., Bigby, C., Iacono, T., & Whiteoak, J. (2019). Effectiveness DOI: 10.3109/13668250.2017.1353681 Beadle-Brown, J. (2019). Factors of communication-specific coping Bigby, C., Bould, E., Iacono, T., & associated with increases over time intervention for adults with traumatic Beadle-Brown, J. (2019). Quality of in the quality of Active Support in brain injury: Preliminary results. practice in supported accommodation supported accommodation services Neuropsychological Rehabilitation, 29(1), services for people with intellectual for people with intellectual disabilities: 73-91. disabilities: What matters at the A multi-level model. Research in DOI: 10.1080/09602011.2016.1259114 organisational level. Journal of Developmental Disabilities, 49. Henderson, D., & Bigby, C. (2019). Intellectual and Developmental DOI: 10.1016/j.ridd.2019.103477 Life stories of people with intellectual Disability. Boyd, M. J., Iacono, T., & McDonald, disability in modern Australia. Journal of DOI: 10.3109/13668250.2019.1671965 R. (2019). The perceptions of Intellectual and Developmental Disability, Bigby, C., Bould, E., Iacono, T., & fathers about parenting a child with 44(4), 421-431. Beadle-Brown, J. (2019). Predicting developmental disability: A scoping DOI: 10.3109/13668250.2018.1467754 good Active Support for people with review. Journal of Policy and Practice in Honan, C., McDonald, S., Tate, R., intellectual disabilities in supported Intellectual Disabilities. Ownsworth, T., Togher, L., Fleming, J., accommodation services: Key DOI: 10.1111/jppi.12287 Anderson, V., Morgan, A., Catroppa, messages for providers, consumers Carney, T., Then, S., Bigby, C., Wiesel, C., Douglas, J., Francis, H., Wearne, and regulators. Journal of Intellectual I., & Douglas, J. (2019). NDIS plan T., Sigmundsdottir, L., & Ponsford, and Developmental Disability. decision-making: Or when tailor-made J. (2019). Outcome instruments in DOI: 10.3109/13668250.2019.1685479 case planning met Taylorism & the moderate-to-severe adult traumatic Bigby, C., Bould, E., Iacono, T., algorithms? Melbourne University Law brain injury: Recommendations Kavanagh, S., & Beadle-Brown, J. Review, 42(3), 1-31. for use in psychological research. (2019). Factors that predict good DOI: 127336/1/127336.pdf Neuropsychological Rehabilitation, 29(6), Active Support in services for people Carney, T., Then, S., Bigby, C., Wiesel, 869-916. with intellectual disabilities: A multilevel I., Douglas, J., & Smith, E. (2019). DOI: 10.1080/09602011.2017.1339616 model. Journal of Applied Research in Realising ‘will, preferences and rights’: Iacono, T., Bould, E., Beadle‐Brown, J., Intellectual Disabilities. Reconciling differences on best practice & Bigby, C. (2019). An exploration of DOI: 10.1111/jar.12675 support for decision-making? Griffith communication within Active Support Bigby, C., Johnson, H., O’Halloran, Law Review. for adults with high and low support R., Douglas, J., West D., & Bould, E. DOI: 10.1080/10383441.2019.1690741 needs. Journal of Applied Research in (2019). Communication access on D’Cruz, K., Douglas, J., & Serry, T. Intellectual Disabilities, 32(1), 61-70. trains: A qualitative exploration of (2019). Personal narrative approaches DOI: 10.1111/jar.12502

38 LA TROBE UNIVERSITY Iacono, T., Keeffe, M., Kenny, A., & (SCRIBE) 2016 statement. Pratiques Submissions McKinstry, C. (2019). A document Psychologiques, 25(1), 103-117. review of exclusionary practices in the DOI: 10.1080/09602011.2016.1190533 Bigby, C. (2019). Royal Commission on Violence, Abuse, Exploitation and context of Australian school education Then, S., Carney, T., Bigby, C., & policy. Journal of Policy and Practice in Neglect of People with Disabilities. Douglas, J. (2018). Supporting Invited written and oral submission to Intellectual Disabilities. decision-making of adults with cognitive DOI: 10.1111/jppi.12290 hearing on group homes – 6 December disabilities: The role of law reform 2019, Melbourne. Iacono, T., McKinstry, C., Wilson, E., & agencies - recommendations, rationales Bagley, K. (2019). Designing and rating and influence. International Journal of Reports options for special school expertise Law and Psychiatry, 61, 64-75. Administrative Appeals Tribunal to support mainstream educational DOI: 10.1016/j.ijlp.2018.09.001 Quarterly Digest – Winter 2019 Edition. inclusion. Australasian Journal of Tilbury, C., Bigby, C., Hughes, M. Brotherhood of St Laurence and Living Special and Inclusive Education (2019). Analysis of Australian Research with Disability Research Centre. DOI: 10.1017/jsi.2019.16 Council grants awarded 2008-2017. http://bit.ly/Quarterly_Digest McEwen, J., Bigby, C., & Douglas, Australian Social Work. Bigby, C., Bould, E., Iacono, T., & J. (2019). Moving on from quality DOI: 10.1080/0312407X.2018.1543437 Beadle-Brown, k. (2019). Enabling assurance: Exploring systems that Whitehouse, A., Varcin, K., Alvares, G., engagement and inclusion: measure both process and personal Barbaro, J., Bent, C., Iacono, T., et al. Organisational factors that embed outcomes in disability services. Journal (2019). Pre-emptive intervention versus Active Support in accommodation of Policy and Practice in Intellectual treatment as usual for infants showing services for people with intellectual Disabilities. early behavioral risk signs of autism disabilities. Melbourne: Living with DOI: 10.1111/jppi.12295 spectrum disorder: A single-blind, Disability Research Centre, La Trobe Mealings, M., Douglas, J., & Olver, randomized controlled trial. Lancet Child University. J. (2019). Is it me or the injury: and Adolescent Health, 3(9), 605-615. hdl.handle.net/1959.9/563636 Students’ perspectives on adjusting DOI: 10.1016/S2352-4642(19)30184-1 Bigby, C., Tipping, S., Bould, E., & to life after traumatic brain injury Wiesel, I., Whitzman, C., Gleeson, Thiele, R. (2019). Strategies to support through participation in study. B., & Bigby, C. (2019). The National people with intellectual disabilities to Neuropsychological Rehabilitation, 1-22. Disability Insurance Scheme in an urban participate in voting. Melbourne: Living DOI: 10.1080/09602011.2019.1574231 context: Opportunities and challenges with Disability Research Centre, La O’Halloran, R., Douglas, J., Cruice, for Australian cities. Urban Policy and Trobe University. M., Davidson, B., McKinley, K., & Research, 37(1), 1-12. http://hdl.handle.net/1959.9/563636 Bigby, C. (2019). Representation and DOI: 10.1080/08111146.2018.1481026 reporting of communicatively vulnerable Podcasts patients in patient experience research. Chapters Still, F., & Bigby, C. (2019). NDIS International Journal of Speech- Bigby, C. (2019). Accommodating Sector Development Podcast, National Language Pathology. cognitive differences: New ideas for Disability Services (NDS). How to DOI: 10.1080/17549507.2019.1567815 social work with people with intellectual design effective supports to facilitate community participation. Šarkić, B., Douglas, J. M., & Simpson, disabilities. In M. Payne and E. Reith player.whooshkaa.com/episode/381683 A. (2019). Peripheral auditory Hall (Eds.) Routledge handbook of social dysfunction secondary to traumatic work theory. London: Routledge, 448- Bigby, C. (2019). ASID Research to brain injury: A systematic review of 460. Practice. What makes a good group literature. Brain Injury, 33(2), 111-128. Iacono, T., & Bigby, C. (2019). The home? DOI: 10.1080/02699052.2018.1539868 health inequalities of people with player.whooshkaa.com/episode?id=421289 Stagg, K., Douglas, J., & Iacono, intellectual and developmental T. (2019). A scoping review of the disabilities: Strategies for change. In working alliance in acquired brain P. Liamputtong (Ed.). Public Health: injury rehabilitation. Disability and Local and Global Perspectives. London: Rehabilitation, 41(4), 489-497. Cambridge University Press, 318-335. DOI: 10.1080/09638288.2017.1396366 Tate, R., Perdices, M., Rosenkoetter, U., Shadish, W., Vohra, S., Barlow, D., et al. (2016). The single-case reporting guideline in behavioural interventions

LIVING WITH DISABILITY RESEARCH CENTRE ANNUAL REPORT 20219-2020 39 Publications 2020

Articles Bigby, C. (2020). The significance D’Cruz, K., Douglas, J., & Serry, T. of research to practice during the (2020). Narrative storytelling as both Anderson, S., & Bigby, C. (2020). COVID-19 pandemic. Research an advocacy tool and therapeutic Writing the script: The overt and and Practice in Intellectual and process: Perspectives of adult hidden contradictions of supporters’ Developmental Disabilities, 7(1), 1-4. storytellers with acquired brain injury. work in independent self-advocacy DOI: 10.1080/23297018.2020.1765847 Neuropsychological Rehabilitation groups. Journal of Intellectual and Bigby, C., & Anderson, S. (2020). 30(8), 1409-1429. Developmental Intellectual Disability, DOI: 10.1080/09602011.2019.158673 45(1), 1-11. Creating opportunities for convivial DOI: 10.3109/13668250.2019.1592127 encounters for people with intellectual Humphreys, L., Bigby, C., & Iacono, disabilities: “It looks like an accident”. T. (2020). Dimensions of group home Anderson, S., & Bigby, C. (2020). Journal of Intellectual & Developmental culture as predictors of quality of life Community participation as identity Disability. outcomes. Journal of Applied Research and belonging: A case study of DOI: 10.3109/13668250.2020.1812178 in Intellectual Disabilities. Arts Project Australia. Research DOI: 10.1111/jar.12748 and Practice in Intellectual and Brown, M., Bishop, G., Winkler, D., Developmental Disability. & Douglas, J. (2020). Young people Humphreys, L., Bigby, C., Iacono, T., DOI: 10.1080/23297018.2020.1753231 in Australian residential aged care: & Bould, E. (2020). Development and Evaluating trends from 2008 to 2018. psychometric evaluation of the group Araten-Bergman, T., & Bigby, C. Australian Health Review. home culture scale. Journal of Applied (2020). Violence prevention strategies DOI: 10.1071/AH19172 Research in Intellectual Disability, 33(3), for people with intellectual disabilities: Browning, M., Bigby, C., & Douglas, J. 515-528. A scoping review. Australian Social DOI: 10.1111/jar.12693 Work. (2020). A process of decision-making DOI: 10.1080/0312407X.2020.1777315 support: Exploring supported decision- Hyett, N., Bagley, K., Iacono, T., et making practice in Canada. Journal of al. (2020). Evaluation of a codesign Araten-Bergman, T., & Shpigelman, Intellectual & Developmental Disability. method used to support the C (2020). Staying connected during DOI: 10.3109/13668250.2020.1789269 inclusion of children with disability COVID-19: Family engagement with in mainstream schools. International adults with developmental disabilities Chetcuti, L., Uljarević, M., Varcin, K. et al. (2020). Subgroups of temperament Journal of Qualitative Methods. in supported accommodation. DOI: 10.1177%2F1609406920924982 Research in Developmental Disabilities. associated with social–emotional DOI: 10.1016/j.ridd.2020.103812 difficulties in infants with early signs of Iacono, T., Bigby, C., Douglas, J., autism. Autism Research. & Spong, J. (2020). A prospective Bertram, T., Power, E., Douglas, J., & DOI: 10.1002/aur.2381 study of hospital episodes of adults Tougher, L. (2020). Friendships after with intellectual disability. Journal of severe traumatic brain injury: A survey Chetcuti, L., Uljarević, M., Varcin, Intellectual Disability Research, 64(5), of current speech pathology practice. K. et al. (2020). The role of negative 357-367. Brain Injury, 34(1), 1020-1030. affectivity in concurrent relations DOI: 10.1111/jir.12725 DOI: 10.1080/02699052.2020.1764100 between caregiver psychological distress and social‐emotional Jamwal, R., Jarman, H., Roseingrave, Bertram, T., Togher, L., Power, E., & difficulties in infants with early signs of E., Douglas, J., & Winkler, D. (2020). Douglas, J. (2020). The maintenance autism. Autism Research, 13, 1349- Smart home and communication of friendships after severe traumatic 1357. technology for people with disability: brain injury. Brain Impairment. DOI: 10.1002/aur.2296 A scoping review. Disability and DOI: 10.1017/BrImp.2020.13 D’Cruz, K., Douglas, J., & Serry, Rehabilitation: Assistive Technology. Bigby, C. (2020). Dedifferentiation T. (2020). Sharing stories of lived DOI: 10.1080/17483107.2020.1818138 and people with intellectual disabilities experience: A qualitative analysis of the Linehan, C., Araten-Bergman, T., in the Australian National Disability intersection of experiences between Beadle-Brown J., et al. (2020). Insurance Scheme: Bringing research, storytellers with acquired brain injury COVID-19 IDD: A global survey politics and policy together. Journal and storytelling facilitators. British exploring the impact of COVID-19 of Intellectual and Developmental Journal of Occupational Therapy. on individuals with intellectual and Disabilities. DOI: 10.1177/0308022619898085 developmental disabilities and their DOI: 10.3109/13668250.2020.1776852 caregivers. HRB Open Resource. DOI: 10.12688/hrbopenres.13077.1

40 LA TROBE UNIVERSITY McKinstry, C., Iacono, T., Kenny, Topping, M., Douglas, J., & Winkler, Wiesel, I., Smith, E., Bigby, C., Then, A., Hannon, J., & Knight, K. (2020). D. (2020). Factors that influence the S., Douglas, J. & Carney, T. (2020). Applying a digital literacy framework quality of paid support for adults with The temporalities of supported and mapping tool to an occupational acquired neurological disability: A decision-making by people with therapy curriculum. Australian scoping review and thematic synthesis. cognitive disability. Social and Cultural Occupational Therapy Journal, 67(3). Disability and Rehabilitation. Geography. DOI: 10.1111/1440-1630.12644 DOI: 10.1080/09638288.2020.1830190 DOI: 10.1080/14649365.2020.1829689 Oliver, S., Gosden-Kaye, E., Jarman, Trembath, D., Sutherland, R., Chapters H., Winkler, D., & Douglas, J. (2020). Caithness, T. et al. (2020). Clinician A scoping review to explore the proposed predictors of spoken Bigby, C. & Douglas, J. (2020). experiences and outcomes of younger language outcomes for minimally Supported decision making. In, people with disabilities in residential verbal children with Autism Stancliffe, R., Wehmeyer, P., Shrogran, aged care facilities. Brain Injury. Spectrum Disorder. Journal of Autism K. (Eds) Choice, preference, and DOI: 10.1080/02699052.2020.1805124 Developmental Disorders. disability: Promoting self-determination DOI: 10.1007/s10803-020-04550-z across the lifespan. New York: Springer, Oliver, S., Gosden-Kaye, E., Winkler, 45-66. D., & Douglas, J. (2020). The Trollor, J., Eagleson, C., Ruffell, B. outcomes of individualized housing et al. (2020). Has teaching about Douglas, J. (2020). Traumatic Brain for people with disability and complex intellectual disability healthcare in Injury. In L. Cummings (ed.) Pragmatic needs: A scoping review. Disability and Australian medical schools improved? Language Disorders: Complex and Rehabilitation,1-15. A 20-year comparison of curricula Underserved Populations. Cham, DOI: 10.1080/09638288.2020.1785023 audits. BMC Medical Education. Switzerland: Springer-Verlag. Sarkic, B., Douglas, J., Simpson, A., DOI: 10.1186/s12909-020-02235-w Douglas, J. (2020). Rehabilitación Vasconcelos, A., Scott, B., Melitsis, Tse, T., Lentin, P. Douglas, J., & Carey, de los trastornos del lenguaje L., & Spehar, S. (2020). Frequency L. (2020). Understanding activity (Chapter 9, Rehabilitation of language of peripheral vestibular pathology participation 3-months after stroke: A disorders). In Juan Carlos Arango following traumatic brain injury: mixed methodology study. Disability Lasprilla, Barbara A. Wilson, & Laiene A systematic review of literature. and Rehabilitation. Olabarrieta Landa (Eds). Principios de rehabilitación neuropsicológica International Journal of Audiology. Vassallo, S., & Douglas, J. (2020). A DOI: 10.1080/14992027.2020.1811905 (Principles of Neuropsychological novel combined visual scanning and Rehabilitation). Kindle version. Shoreland, J., Douglas, J., & verbal cuing intervention improves O’Halloran, R. (2020). Cognitive- facial affect recognition after chronic Submissions communication difficulties following severe traumatic brain injury: A single Bigby, C. (2020). Parliamentary Inquiry traumatic brain injury sustained in case design. Neuropsychological into the NDIS Workforce. Written older adulthood: A scoping review. Rehabilitation. Submissions April 2020. Written and International Journal of Language and DOI: 10.1080/09602011.2020.1742744 oral Submission, July 2020. Communication Disorders. Wearne, T., Anderson, V., Catroppa, Bigby, C. (2020). Parliamentary Inquiry DOI: 10.1111/1460-6984.12560 C., et al. (2020). Psychosocial into the NDIS Quality and Safeguards Stagg, K., Douglas, J., & Iacono, T. functioning following moderate-to- Commission. Written submission, July (2020). The perspectives of allied severe paediatric traumatic brain injury: 2020. health clinicians on the working Recommended outcome instruments alliance with people with stroke- for research and remediation studies. related communication impairment. Neuropsychological Rehabilitation, Neuropsychological Rehabilitation, 30(5), 973-987. 1-20. DOI: 10.1080/09602011.2018.1531768 DOI: 10.1080/09602011.2020.1778491 Wiesel, I., Bigby, C., Kamstra, P., & Tilbury, C., Bigby, C., & Hughes, Farmer, J. (2020). Possibility and risk M. (2020). The production and in encounter between people with and dissemination of Australian social without intellectual disability. Journal of work scholarship: A citation analysis. Intellectual & Developmental Disability. Australian Social Work. DOI: 10.3109/13668250.2020.1837606 DOI: 10.1080/0312407X.

LIVING WITH DISABILITY RESEARCH CENTRE ANNUAL REPORT 20219-2020 41 Presentations

Keynotes and invited Clifford-Simplican, S. Adjunct Associate Professor (2019). presentations 2019 Critiquing approaches to community Bigby, C. (2019, February). participation of people with Understanding community intellectual disabilities. participation for people with Douglas, J. Winkler, D., D’Cruz, intellectual disabilities. Keynote. K., Buculo, C., & Finis, C. (2019). Hong Kong network on intellectual Development and evaluation of disability, Hong Kong. participant led videos to train Bigby, C. (2019, May). What is support workers of people with necessary to embed active support severe acquired brain injury. WFNR in supported living services. British Neuropsychological Rehabilitation Professor Christine Bigby Learning Disabilities Conference, Symposium, Granada, Spain. presentinh the keynote at Birmingham, UK. Selected other the Hong Kong Network on Bigby, C. (2019, May). Using convivial Intellectual Disability 2019. encounter to create social inclusion presentations for people with more severe Anderson, S., & Bigby, C. (2019, intellectual disabilities: What does November). Writing the script: The practice look like? Utrecht University overt and hidden contradictions of of Humanities - Conference on Social supporters’ work in independent Inclusion. Utrecht, Netherlands. self-advocacy groups. Annual Bigby, C, (2019, June). Understanding conference of the Australasian types of community participation Association for Intellectual Disability, and designing effective support for Adelaide, Australia. people with intellectual disabilities. Araten-Bergman, T. (2019, November). Plenary. Asia Pacific Autism Models for forming and supporting Conference, Singapore. circles of support for people with Bigby, C., (2019, November). Why is intellectual disability. Annual Dr Lincoln Humphreys research evidence important? What conference of the Australasian presenting at the does it say about social inclusion of Association for Intellectual Disability, International Association Adelaide, Australia. for the Scientific Study of people with intellectual disabilities? Developmental Disabilities Festival of Inclusion, Sydney, Australia. Bigby, C. (2019, August). ‘Glossing Conference, Glasgow, Bigby, C., (2019, November). over issues in the rush to have Scotland in 2019. Perspectives of people with everybody under the disability intellectual disabilities about voting. banner’: A case study of a Electoral Regulation Research dedifferentiated reform in the Network, Adelaide, Australia. Australian National Disability Insurance Scheme. The International Bigby, C. (2019, November). What Association for the Scientific Study does the evidence say? Having a of Intellectual and Developmental Home Forum, ACT Office Disability, Disabilities Conference, Glasgow, Canberra, Australia. Scotland. Bigby, C., Douglas, J., & Iacono, T. Bigby, C., Bould, E., Iacono, T., & (2019, March). Enabling mainstream Beadle-Brown, J. (2019, August). systems to be more inclusive of Identifying factors that predict good people with cognitive disabilities. Active Support in group homes for Victorian Allied Health Conference, people with intellectual disabilities William Crips presenting Melbourne. using multi-level modelling. The at the Annual conference Clegg, J. Adjunct Professor (2019). International Association for the of the Australasian Helping damaged people manage Scientific Study of Intellectual Association for Intellectual Disability, Adelaide, 2019. their chaotic emotions. and Developmental Disabilities Conference, Glasgow, Scotland.

42 LA TROBE UNIVERSITY Bigby, C., Bould, E., Iacono, T., & D’Cruz, K., Douglas, J., & Serry, T. Iacono, T., Hyett, N., Spong, J., Bagley, Beadle-Brown, J. (2019, August). (2019, July). A grounded theory study K., Landry, O., McKinstry, C., Arthur- Organisational structures and of narrative storytelling following Kelly, M., & Garcia Melgar, A. (2019, processes associated with good acquired brain injury: An altruistic December). Development of a Active Support. The International occupational opportunity to help reasonable adjustments for inclusive Association for the Scientific Study others through story sharing. education rating scale. Australian of Intellectual and Developmental Occupational Therapy Australia, Association for Research in Education Disabilities Conference, Glasgow, National Conference and Exhibition, Conference, Brisbane. Scotland. Sydney, Australia. Iacono, T., Bigby, C., Douglas, J., Bigby, C., & Douglas, J. (2019, March). D’Cruz, K., Douglas, J., & Serry, T. & Spong, J. (2019, August). A Developing an evidence-based (2019, July). Narrative storytelling prospective study of hospital support for decision making practice following acquired brain injury: A encounters by people with framework. Australian Guardianship collaborative therapeutic relationship intellectual and developmental and Administration Council between storytellers and facilitators. disability and a comparison group. Conference, Canberra, Australia. Occupational Therapy Australia, Association for the Scientific Study Bigby, C., & Douglas, J., & Smith, National Conference and Exhibition, of Intellectual and Developmental E. (2019, March). The La Trobe Sydney, Australia. Disabilities European Regional Support for Decision Making Douglas, J., Bigby, C., & Iacono, T. Congress, Glasgow. Practice Framework: Preliminary (2019, May). Enabling hospitals to Iacono, T., Hyett, N., Spong, J., analysis. Australian Guardianship and be more inclusive and responsive Bagley, K., Landry, O., Arthur-Kelly, Administration Council Conference, to people with cognitive disabilities. M., McKinstry, C., & Garcia Melgar. Canberra, Australia. Australasian Society for the Study (2019, August). Development of a Bigby, C., & Humphreys, L. (2019, of Brain Impairment/ New Zealand reasonable adjustments for inclusive August). Patterns of staff culture Rehabilitation Association Conference, education rating scale. Association in Australian group homes. The Wellington, New Zealand. for the Scientific Study of Intellectual International Association for the Douglas, J., Bracy, C., Snow, P., and Developmental Disabilities Scientific Study of Intellectual Knox, L., & De Maio, C. (2019). European Regional Congress, August, and Developmental Disabilities Understanding and treating Glasgow. Conference, Glasgow, Scotland. cognitive-communication deficits Knox, L. & Douglas, J. (2019). “If Bigby, C., Douglas, J., & Iacono, T. that impact on success in the there’s an official term called (2019, August). Enabling hospitals to workplace following traumatic brain supported decision making, I have be more inclusive and responsive to injury. International Brain Injury no clue”: Experiences of community- people with intellectual disabilities. Association’s 13th World Congress. based rehabilitation professionals The International Association for Humphreys, L. Bigby, C., & Iacono, in supporting decision-making the Scientific Study of Intellectual T. (2019, August). The Group Home participation for adults after ABI. and Developmental Disabilities Culture Scale: Validation and use in Australasian Society for the Study Conference, Glasgow, Scotland. predicting quality of staff support of Brain Impairment/ New Zealand in group homes. The International Rehabilitation Association Conference, Crisp, W., Bigby C., & Whiteside, M. Wellington, New Zealand. (2019, November). Strategies for Association for the Scientific Study supporting people with intellectual of Intellectual and Developmental Mealings, M., Douglas, J., & Olver, disability to have choice and control Disabilities Conference, Glasgow. J. (2019, May). The student over their lives. Annual conference Iacono, T., Hyett, N., Spong, J., Bagley, journey: Living and learning of the Australasian Association K., Landry, O., McKinstry, C., Arthur- following traumatic brain injury. for Intellectual Disability, Adelaide, Kelly, M., & Garcia Melgar, A. (2019, Australasian Society for the Study Australia. December). A randomised controlled of Brain Impairment/ New Zealand trial of shifting perceptions to Rehabilitation Association Conference, D’Cruz, K., Douglas, J., & Serry, Wellington, New Zealand. T. (2019, May). Humanising enhance inclusive school education healthcare: Understanding the of students with disability through McEwan, J. (2019, November). What potential of narrative storytelling. reasonable adjustments. Australian is good service quality? Frontline day Australasian Society for the Study Association for Research in Education service staff’s perspectives on what of Brain Impairment/New Zealand Conference, Brisbane. it is and how it should be measured. Rehabilitation Association Conference, Wellington, New Zealand.

LIVING WITH DISABILITY RESEARCH CENTRE ANNUAL REPORT 20219-2020 43 Presentations

Annual conference of the Australasian communication (AAC) Resources Keynotes and invited Association for Intellectual Disability, for children with intellectual and Adelaide, Australia. developmental disability. presentations 2020 Bigby, C. (2020, February). Convivial McNabb, J. (2019, November). Article Williams, L., Douglas, J., & Serry, encounter as a means of social 12 and the NSW guardianship T. (2019, May). “I really try to inclusion for all ages. Invited framework: A case study highlighting plug into the person”: Strategies presentation, barriers for people with intellectual used by clinicians to build and Seminar, Australia. disability regarding legal capacity nurture the therapeutic alliance in and autonomy of decision-making. community brain injury rehabilitation. Bigby, C. (2020, July). What makes Annual conference of the Australasian Australasian Society for the Study a difference to quality of life and Association for Intellectual Disability, of Brain Impairment/ New Zealand quality of services: Some evidence Adelaide, Australia. Rehabilitation Association Conference, from research. Queensland Disability Network, Australia. Pozzebon, M., Douglas, J., & Ames, D. Wellington, New Zealand. (2019, May). The spousal experience Winkler, D. & Douglas, J. (2019, May). Bigby, C. (2020, September). Enabling of Primary Progressive Aphasia. Integrated apartments for people hospitals to be more inclusive and Australasian Society for the Study with disability: Individual experience responsive to people with intellectual of Brain Impairment/ New Zealand and outcomes. Australasian Society disabilities. ASID Webinar. Rehabilitation Association Conference, for the Study of Brain Impairment/ Bigby, C. (2020, October). An Wellington, New Zealand. New Zealand Rehabilitation evidence-based support for decision Ritchie., Bigby, C., & Douglas, J. (2019, Association Conference, Wellington, making practice framework. Invited November). Keeping people with New Zealand. presentation, Disability Summit. an intellectual disability safe: A Winkler, D., & Douglas, J. (2019, May). Bigby, C. (2020, October). case study of sexual abuse. Annual Co-design, pilot and evaluation Dedifferentiation and people with conference of the Australaisian of participant led videos to train intellectual disabilities in the NDIS. Association for Intellectual Disability, support workers. Australasian Society Invited presentation, Possability, Adelaide, Australia. for the Study of Brain Impairment/ Australia. New Zealand Rehabilitation Stagg, K., Douglas, J., & Iacono, Bigby, C. (2020, October). Identifying T. (2019, May). Communication Association Conference, Wellington, New Zealand. difference in culture between poor impairment and the working performing and better group homes. alliance in stroke rehabilitation. Winkler, D., Douglas, J., D’Cruz, K., Tizard Centre, seminar in conjunction Australasian Society for the Study Buccolo, C., & Finis, C. (2019, July). with CQC, UK. of Brain Impairment/ New Zealand Outcomes of participant-led videos: Rehabilitation Association Conference, Supporting people with severe brain Humphreys, L. (2020, October). Wellington, New Zealand. injury to have choice and control, The Group Home Culture Scale: Development and findings. Tizard Tipping, S., Bigby, C., & Douglas, set goals and direct their supports. Occupational Therapy Australia, Centre, seminar in conjunction with J. (2019). The perceptions and CQC, UK. experiences of voting by people with National Conference and Exhibition, intellectual disability: Implications Sydney, Australia. for Australian democracy. Van Nierop, M., Johnson, H., Heppell, A., Rezzani, N., Iacono, T. (2019). Empowering families to use and obtain augmentative and alternative

44 LA TROBE UNIVERSITY Partners

The Living with Disability Research Centre works in partnership with government and non-government organisations and other universities. Our Centre also continues to work in partnership with the Summer Foundation, Australia’s leading organisation on research regarding young people with acquired brain injury in nursing homes. This partnership continues to facilitate pioneering research that focuses on developing interventions Our Partners that work for people with • annecto Inc • NSW Trustee and Guardian acquired brain injury and • Aruma • Oak Possability brings them back into • Australian Research Council • Office of Public Advocate Victoria mainstream society. • Civic Disabilities Services • Office of the Public Guardian QLD • Dundaloo Support Services • Principals’ Association of Specialist • Endeavour Foundation School Victoria Inc • Epworth Health • Queensland Mental Health Commission • GenU • Queensland Office of the Public • Golden City Support Services Guardian • Greystanes Disability Services • Queensland University of • Help Enterprises Technology • Identitywa • Rocky Bay • Inclusion Melbourne • Summer Foundation • Institute for Safety, Compensation • The Public Advocate Queensland and Recovery Research • The Public Trustee of Queensland • Jewish Care • Transport Accident Commission • Melba Support Services • Unisson Disability Services • Melbourne Health • Yooralla • NDIS Information, Linkages and Capacity Building • NDIS Quality and Safeguards Commission • National Disability Services

LIVING WITH DISABILITY RESEARCH CENTRE ANNUAL REPORT 20219-2020 45 Contacting Us

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Living with Disability Research Centre La Trobe University Bundoora VIC 3086 Australia T + 61 3 9479 3826 E [email protected] W latrobe.edu.au/lids T @LIDSLaTrobe

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