Building the evidence base for community participation and inclusion

Research Team
Professor Christine Bigby - La Trobe University
Professor Jacinta Douglas - La Trobe University
Professor (Emeritus) Terry Carney - University of Sydney
Dr Shih-Nhing Then - Queensland University of Technology
Dr Ilan Wiesel - University of Melbourne
Dr Elizabeth Smith - La Trobe University

Project aim: This major research project aims to build support for decision making capacity of decision supporters of people with cognitive disability, in particular people with intellectual disability and acquired brain injury. The study will test the effectiveness of training for supporters in using the evidence based La Trobe Support for Decision Making Practice Framework, and also develop further knowledge about the exact processes involved in supporting people with cognitive disabilities. Participants are dyads of a decision maker (a person with cognitive disability) and a supporter (a family member, friend, or paid worker). The project is being conducted in Victoria, New South Wales and Queensland and the data collection phase with 76 dyads has been recently been finished. This project has now moved into the analysis phrase.

Partners: La Trobe University, University of Sydney, Queensland University of Technology, University of New South Wales, Endeavour Foundation, Victorian Office of the Public Advocate, Queensland Office of the Public Advocate, Melbourne City Mission, NSW Department of Family and Community Services, Queensland Mental Health Commission, Inclusion Melbourne, NSW Office of the Public Guardian, Queensland Public Trustee, Summer Foundation, NSW Trustee and Guardian, Queensland Office of the Public Guardian.

Funding: ARC Linkage Grant
Date: 2015
Contact: Professor Christine Bigby – C.Bigby@latrobe.edu.au

Research Team
Professor Christine Bigby - La Trobe University
Professor Jacinta Douglas - La Trobe University

Project aim: This project is part of the support for decision making research program. The aim of this project is to translate existing evidence on the La Trobe Support for Decision Making Practice Framework to support practice within the Transport Accident Commission (TAC). The project will involve training a cohort of the TAC’s independence claims employees to apply the strategy to their client planning interactions and deliver services consistent with contemporary disability practice. Following training, our research team will assess the training specific impact on the capability of independence claims employees to be effective supporters of decision making. Training and data collection has been completed and the final report is in preparation.

Funding: Transport Accident Commission
Date: 2018
Contact: Professor Jacinta Douglas – J.Douglas@latrobe.edu.au

Research Team
Professor Christine Bigby - La Trobe University
Professor Jacinta Douglas - La Trobe University

Project aim: This project is part of the support for decision making research program. The aim of this project is to adapt a version of the La Trobe Support for Decision Making Practice Framework that could be adopted and utilised by the Queensland Public Trustee. Training in the adapted Framework is currently being rolled out across the organisation and data collected from participants about changes to their practice.

Funding: Queensland Public Trustee
Date: 2019
Contact: Professor Christine Bigby – C.Bigby@latrobe.edu.au

Research Team:
Professor Jacinta Douglas - La Trobe University
Professor Christine Bigby - La Trobe University
Professor Teresa Iacono - La Trobe University
Rebecca Leeson - La Trobe University

Project aim: The aim of this project is to implement and evaluate innovative strategies to support social activity, social relationships and community inclusion for people with severe brain injury who live in a range of different environments. The intervention program is tailored to each individual and evaluated using single case experimental design methods. Many adults who sustain severe traumatic brain injury experience difficulties developing and maintaining connections within the community. They report having few, if any, friends and having little social or community involvement. The study is in the final stages of data collection and analysis

Funding: Institute of Safety Compensation and Research Recovery
Date: 2016
Contact: Professor Jacinta Douglas - J.Douglas@latrobe.edu.au

Research Team
Dr Ilan Wiesel - University of Melbourne
Professor Christine Bigby - La Trobe University
Professor Brendan Gleeson - University of Melbourne
Dr Ellen van Holstein - University of Melbourne

Project aim: This project, led by Ilan Wiesel (Melbourne University), aims to assess the impact of the NDIS on urban policy and delivery of mainstream urban services; to better understand the agency of people with disability as participants in mainstream services; and, to reveal the urban context factors influencing participation of people with disability in mainstream urban services. It will explore at how the NDIS will affect participation in mainstream urban services, (education, health, transport, community centres, open space, recreational facilities and other urban services). The grant will run over a three year period and will aim to improve policy, capacity building and help the NDIS deliver on some of its challenging goals.

Funding: ARC Linkage Grant
Date: 2017
Contact: Dr Ilan Wiesel - Ilan.Wiesel@unimelb.edu.au

Outputs:
Wiesel, I., Whitzman, C., Gleeson, B., & Bigby, C. (2018). The National Disability Insurance Scheme in an Urban Context: Opportunities and Challenges for Australian Cities. Urban Policy and Research, 1-12.
Ilan Wiesel, Brendan Gleeson, Carolyn Whitzman, Ellen van Holstein & Christine Bigby (2018) We can't just leave it to the NDIS to create cities that work to include people with disability, The Conversation.
Ilan Wiesel, Carolyn Whitzman, Brendan Gleeson & Christine Bigby (2017) How will the NDIS change Australian cities? Melbourne Sustainable Society Institute, University of Melbourne.

More information

Research Team:

Professor Christine Bigby – La Trobe university

Dr Alan Hough – Purpose At Work

Dr Caroline Alcorso – Purpose At Work

Ms Yumi Stamet – Purpose at Work

Project aim: This research aims to identify the pathways that people with disabilities take in becoming members of various type of boards (for profit, not for profit, and public), understand the support they have received in carrying out the functions associated with being a board director, their experiences of being included in the work of a board and recommend strategies for increasing the number of board directors who have a disability.

Partners: La Trobe University, Purpose at Work

Date: 2022

Funding: This research has received funding from a philanthropic foundation.

Contact: Professor Christine Bigby - c.bigby@latrobe.edu.au and Dr Alan Hough - alan@purposeatwork.com.au

Participant Information Statement

Participant Information Statement (Simple text)

Research Team
Dr Emma Bould - La Trobe University

Project aim: Building social relationships in the community is difficult for anyone, let alone for a person with intellectual disabilities. There is a lack of evidence about how to provide effective and consistent support to facilitate people with intellectual disabilities to have convivial encounters in community or commercial places. So we raised the question… What might be a catalyst for encounters in the community for individuals with intellectual disabilities? Our answer: Cute, adorable, friendly dogs.

Funding:

Outputs
Bould, E., Bigby, C., Bennett, P. C., & Howell, T. J. (2018). ‘More people talk to you when you have a dog’–dogs as catalysts for social inclusion of people with intellectual disabilities. Journal of Intellectual Disability Research.

Research Team
Professor Christine Bigby - La Trobe University
Dr Sian Anderson - La Trobe University
Dr Nadine Cameron - La Trobe University

Project Aim: This study, conducted in collaboration with NDS was completed at the end of 2018. Community participation has been a long held but seldom realized aim of disability policy. It is an ill-defined and slippery concept. The aim of this study was to develop conceptual clarity about and a typology of different types of community participation and interventions to support it. And then to present exemplar case studies of interventions illustrating the different approaches, as well as the resource and skills necessary to deliver good support for community participation to people with intellectual disabilities.

We identified 3 types of community participation and interventions. Community participation as:

Social relationships and interventions to develop social
relationships

• Convivial encounters and interventions that supported social interactions where there is a shared identity or activity with others and a sense of pleasantness or warmth.
• Belonging and interventions to support a sense of belonging

The full report has 5 detailed case studies that provide a blueprint for designing programs that provide individualized support for these different types of community participation. During 2019 we will be working with NDS to produce more accessible versions of this material in the form of a guide to good practice and design of support for community participation.

Funding:

Papers
Bigby, C., Anderson, S., Cameron, N. (2018) Identifying conceptualisations and theories of change embedded in interventions to facilitate community participation for people with intellectual disability.  A scoping review. Journal of Applied Research in Intellectual and Developmental Disabilities,31, 2, 165-180

Research Team
Professor Christine Bigby - La Trobe University
Professor Jacinta Douglas - La Trobe University
Dr Suzane Vassallo - La Trobe University

Project background: This new resource launched in late 2018 and is developed for disability support workers. Enabling people to take risks is an integral part of disability support work. It is also important that practice leaders, frontline managers, senior managers are aware of the essentials of enabling risk, outlined in this resource, as they play a significant role in creating the right environment for support workers to put risk enablement into practice.  This project was supported by funding from the New South Wales Department of Family & Community Services.

Prohject aim:

Outputs
View the resource

Research Team
Professor Christine Bigby - La Trobe University
Sophia Tipping - La Trobe University
Dr Emma Bould - La Trobe University

Background: Voting is an important part of political citizenship. This first part of this study aimed to explore the barriers and facilitators of voting for people with intellectual disabilities in order to understand how to best support their participation. The findings showed that some people with intellectual disabilitiesdo have political opinions, are interested in voting and have had experiences which help them understand voting processes. Only around half of all the people with intellectual disabilities had voted and many were unclear about their enrolment status. Barriers to voting were limited support, low expectations, and uncertainty about provision of support about voting by staff in disability support services and family members.

Project Aim:

Funding: The study is funded by the Victorian Electoral Commission with support from Inclusion Melbourne and a consortium of other Australian Electoral  Commissions. Based on the findings, the Victorian Electoral Commission designed a capacity building initiative which targeted two disability support organisations in the lead up to the 2018 November State election. The initiative is being evaluated by our team of researchers and a final report prepared by March 2019.

View the report

Research Team
Professor Christine Bigby - La Trobe University
Professor Jacinta Douglas - La Trobe University

Project background:

Project aim: This is a project to develop a framework for supported decision making for people with intellectual disability and training materials for staff at Kanangra an institution in NSW.

Funding: New South Wales Department of Family and Community Services

View resource

Research Team
Lucy Knox (PhD Candidate) - La Trobe University
Professor Jacinta Douglas - La Trobe University
Professor Christine Bigby -La Trobe Unisversity

Project background: For people with cognitive disabilities, being able to make decisions not only requires having their rights acknowledged and upheld, but also having access to support that enables participation. To date, there has been limited investigation into how people with traumatic brain injury (TBI) and those in their social support network participate in the decision-making process. This knowledge is required to ensure that people with TBI have access to decision-making support that meets their needs and supports their participation. This is the first body of research to simultaneously explore the experiences of adults with TBI and those around them in making decisions about life after injury. It highlights the critical role that supporters play in supporting decision-making participation and provides guidance for those supporting adults with TBI regarding how they can maximise the person’s participation.

Project aim: The aim of this research was to explore the experiences of adults with severe TBI and those around them in making decisions about their lives after injury in order to inform practice. We found that support in decision making always involved other people and was never done solely by the individual. The process was also influenced by a person’s environment, view of themselves, knowledge of decision-making processes, and their ability to give and receive support. In addition, several factors were identified that supported a positive support relationship, including knowing the person well, understanding the impact of the brain injury and taking a positive approach to risk. Based on these findings, recommendations for clinical practice have been developed.

Funding: La Trobe University Postgraduate Scholarship, Victorian Brain Injury Recovery Association & East Kew Branch of the Community Bendigo Bank Research Scholarship.

Outputs:

• Knox, L., Douglas, J., & Bigby, C. (2013). Whose decision is it anyway? How clinicians support decision-making participation after acquired brain injury. Disability and Rehabilitation, 35(22), 1926-1932. doi: 10.3109/09638288.2013.766270
• Knox, L., Douglas, J., & Bigby, C. (2015). Becoming a decision-making supporter for someone with acquired cognitive disability following TBI. Research and Practice in Intellectual and Developmental Disabilities. Advance online publication. doi: 10.1080/23297018.2015.1077341
• Knox, L., Douglas, J., & Bigby, C. (2015). ‘The biggest thing is trying to live for two people’: Spousal experiences of supporting decision-making participation for partners with TBI. Brain Injury, 29(6), 745-757. doi: 10.3109/02699052.2015.1004753
• Douglas, J., Bigby, C., Knox, L., & Browning, M. (2015). Factors that underpin the delivery of effective decision-making support for people with cognitive disability. Research and Practice in Intellectual and Developmental Disabilities, 2(1), 37-44. doi: 10.1080/23297018.2015.1036769
• Douglas, J., Drummond, M., Knox, L., & Mealings, M. (2015). Rethinking social-relational perspectives in rehabilitation: Traumatic brain injury as a case study. In K. McPherson, B.E. Gibson, A. Leplege (Eds.), Rethinking rehabilitation: Theory and practice (pp.137-162). Boca Raton, FL: CRC Press.
• Knox, L., Douglas, J. M., & Bigby, C. (2016). “I won't be around forever”: Understanding the decision-making experiences of adults with severe TBI and their parents. Neuropsychological Rehabilitation, 26(2), 236-260. doi:10.1080/09602011.2015.1019519
• Knox, L., Douglas, J., & Bigby, C. (2016). “I’ve never been a yes person”: Decision-making participation and self-conceptualisation after severe traumatic brain injury. Manuscript under review.

Research Team
Michelle Browning (PhD Candidate) - La Trobe University
Professor Christine Bigby - La Trobe University
Professor Jacinta Douglas - La Trobe University

Project background: While supported decision making is recognised as central to enabling the rights of people with disabilities relatively little is known about how to provide support for decision making.  This research contributes to the small body of knowledge exploring what the process of supported decision making looks like in practice.

Project aim: This research aims to learn from the experiences of seven people with intellectual disabilities and their supporters living in Canada who engage in supported decision making. It seeks to understand the process of supported decision making by talking to participants and observing their decision making in practice.

An analysis of the research data suggests the process of supported decision making emerged from the dynamic interaction of a number of factors:

1. the individual attributes and experiences the person and their supporter brought to the process
2. the nature of their relationship and the proposed decision
3. the environment in which decision making occurred.

In the context of these four factors the person making the decision expressed their will or preferences which were perceived by the supporter and responded to in a variety of ways.

This research will develop a theory which describes the process of supported decision making observed in Canada.

Funding: PhD research.

Outputs: Michelle Browning, Christine Bigby & Jacinta Douglas (2014) Supported Decision Making: Understanding How its Conceptual Link to Legal Capacity is Influencing the Development of Practice, Research and Practice in Intellectual and Developmental Disabilities, 1:1, 34-45, DOI:10.1080/23297018.2014.902726