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February 2024

Inclusive disability housing, efficient support and better outcomes for NDIS participants in rural, regional and remote Australia – Summer Foundation submission to the Joint Standing Committee on the NDIS

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Description:

The Summer Foundation is pleased to make a submission to the Joint Standing Committee on the NDIS on NDIS participant experience in rural, regional and remote Australia. The complexity of the NDIS system creates additional disadvantages and barriers for people with disability living in rural, regional and remote locations where there may be a lack of quality housing and supports available. This often means that NDIS participants in these locations are not able to benefit from the NDIA and are not supported to achieve their goals. These inequities make the NDIS less effective for them and often results in reduced support, misused or wasted NDIS resources and poor outcomes for NDIS participants and their families.

 

Authentic collaboration between government and the sector will support innovation in cost-effective housing and living solutions that improve the outcomes of people with disability no matter where they live. The Summer Foundation has been partnering with people with disability in the co-design, implementation and evaluation of strategies, to ensure the developed solutions systematically improve housing and living outcomes for people with disability.


January 2024

Inclusive disability housing, efficient support and better outcomes – Summer Foundation Federal Pre-Budget Submission

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The Summer Foundation’s Federal Pre-Budget Submission 2024-25 builds on the NDIS Review final report and supporting analysis, reflecting the investments that are needed to address current service gaps, move the NDIS towards an evidence based scheme and improve outcomes for people with disability.

 

Over the last decade there has been a distinct lack of innovation in disability housing and support in Australia. Investment in innovation and practical research to inform the development of inclusive housing and efficient support that deliver better outcomes for people with disability is critical to the future of the scheme and the broader disability ecosystem.


November 2023

Choosing a support coordinator

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We have created a guide to help you choose a support coordinator. We have included ideas for important things you might want to know about your support coordinator, and questions you might want to ask them.


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October 2023

Summer Foundation – La Trobe University Research Program 2022/2023

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The enduring research partnership between the Summer Foundation and La Trobe University’s Living with Disability Research Centre is testament to what is possible when rigorous academic methods are applied to real-world problems. The research program at the Summer Foundation is unashamedly ambitious. It needs to be in order to address the manifold challenges experienced by people with disability in Australia today.
 
Our Research team consists of more than 20 researchers, including experienced academics, clinical experts, research assistants, and doctoral candidates. They come from diverse backgrounds, including psychology, speech pathology, occupational therapy, physiotherapy and architecture. Together, the team work on more than 20 active projects covering topics as broad as younger people in residential aged care, hospital discharge, the disability housing market, and factors contributing to quality disability support.
 
This report outlines the research undertaken in 2022/23 as part of the program, our aims and our outputs.


December 2022

Co-designing with adults with acquired neurological disability in the community: a scoping review protocol 

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Description:

Co-designing healthcare research and health services is becoming increasingly prominent. Co-design invites people with disability to leverage their lived experience knowledge to improve service provision, as well as ensuring meaningful and relevant research. Given the emerging nature of the use of co-design with adults with neurological disability, well-defined guidelines on best practice are yet to be developed. The aim of this scoping review is to synthesise available peer-reviewed literature which investigates the use of co-design in research and/or service development with adults who have an acquired neurological disability and live within the community. The findings of this review will help to guide future co-design practice, ensuring people with acquired neurological disability are best supported and engaged in the process.


Citation:

D’Cruz, K., Antonopoulos, S., Rothman, R., Douglas, J., Winkler, D., & Oliver, S. (2022). Co-designing with adults with acquired neurological disability in the community: A scoping review protocol. BMJ Open.


December 2022

“You’re supporting the whole person”: A grounded theory study of quality support according to close others of people with neurological disability

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Description:

Close others of people with acquired neurological disability often play a key role in supporting their relative to get necessary support, and therefore have valuable insight into what facilitates quality support. Situated within a series of studies aiming to build a holistic model of quality support grounded in the lived experience of adults with acquired neurological disability, support workers and close others, this study explores the perspective of close others. The findings complement the perspective of people with disability and support the key notion of quality support honouring the person’s autonomy and highlight the need to raise accountability in the disability sector.

 

You can read a summary here.


Citation:

Topping, M., Douglas, J., & Winkler, D. (2022). “You’re supporting the whole person”: A grounded theory study of quality support according to close others of people with neurological disability, Neuropsychological Rehabilitation


November 2022

“Let the people you’re supporting be how you learn”: a grounded theory study on quality support from the perspective of disability support workers

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Quality disability support is fundamental to the lives of many adults with acquired neurological disability. However, little is known about the factors that influence the quality of paid support. This study is part of a larger project to develop a holistic understanding of quality support, grounded in the experience of people with acquired neurological disability, close others, and disability support workers. The current study focuses on the support worker perspective. This study found that critical to quality support is centring the needs and preferences of people with disability, improving support worker working conditions and supporting people with disability and support workers to build effective, balanced working relationships.


Citation:

Topping, M., Douglas, J., Winkler, D. (2022). “Let the people you’re supporting be how you learn”: A grounded theory study on quality support from the perspective of disability support workers. Disability and Rehabilitation


November 2022

The healthcare needs and general practice utilization of people with acquired neurological disability and complex needs: A scoping review

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For people with acquired neurological disabilities and complex needs, general practitioners (GPs) play an important role in health management and early intervention for the prevention of comorbidities and health complications. People with disability are a vulnerable group who need and have the right to, quality general practice services. It is therefore important to understand the health needs and service use of this group. The aim of this review was to identify the healthcare needs and general practice utilization of people with acquired neurological disabilities and complex needs.

This paper found that people with acquired neurological disabilities and complex needs were vulnerable to receiving suboptimal healthcare. The literature highlighted issues regarding the accessibility of services, the fragmentation of health services and inadequate preventative care. GPs were challenged to offer adequate disability‐related expertise and to meet the mental health needs of people with disability within time constraints.


Citation:

Oliver, S., Douglas, J., Winkler, D., Pearce, C., Minter, E., Jarman, H. K., and Topping, M. (2022). The healthcare needs and general practice utilization of people with acquired neurological disability and complex needs: A scoping review. Health Expectations


October 2022

Preventing and better protecting younger people with complex needs from experiencing violence, abuse, neglect and exploitation

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Summer Foundation report to the Disability Royal Commission
There are many younger people with complex needs living in inappropriate settings such as residential aged care (RAC) and hospitals. Recent government inquiries have provided opportunities for defining and measuring progress towards essential reforms. However, more still needs to be done to improve the experiences and outcomes of younger people with complex needs. To help ensure the Disability Royal Commission (DRC) is best placed to drive policy reform that will meaningfully improve outcomes for this cohort, this report summarises the key areas in need of action.


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October 2022

Providing an evidence base for Home and Living decisions – A survey of occupational therapists

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The Summer Foundation and Occupational Therapy Australia conducted a survey in July 2022 to explore the role of OTs in helping NDIS participants request SDA funding. The aim was to understand the functional assessment and report-writing process from the OT perspective and provide actionable insights to the NDIA.
 
Key Findings include:

  1. Clear, concise and rigorous OT reports have the potential to help NDIS participants with the highest levels of needs secure adequate funding for housing and support, including funding for specialist disability accommodation (SDA)
  2. However, there is currently very limited information about what evidence the NDIA needs from OT reports to make informed, timely and accurate decisions.
    Occupational therapists need to know what the NDIA thinks a ‘good’ functional assessment report looks like to help NDIS participants provide evidence for Home and Living decisions.


Citation:

Winkler, D., D’Cruz, K., Minter, E., Mulherin, P. (2022). Providing an evidence base for Home and Living decisions: A survey of occupational therapists writing functional assessment reports for NDIS participants. Summer Foundation.


October 2022

‘What’s next?’ The journey from hospital to community engagement from the perspectives of adults following severe acquired brain injury: a scoping review protocol

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Community integration and social participation remain a challenge for many individuals following acquired brain injury (ABI) and the transition from hospital to home is a complex journey. It is important to conceptualise this transition from the perspective of people with ABI, to inform future research with the overall aim of improving the experience of community re-engagement and maintaining important relationships within social networks. This article provides the protocol for a study that will review existing literature to support conceptualisation of community participation from those who have experienced the transition to the community following discharge from hospital.


Citation:

Currie, S., Douglas, J., and Winkler, D. (2022). ‘What’s next?’ The journey from hospital to community engagement from the perspectives of adults following severe acquired brain injury: A scoping review protocol. BMJ Open.


August 2022

Summer Foundation – La Trobe University Research Program 2021/2022

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The Summer Foundation – La Trobe University Research Program is designed to understand the issue of young people in aged care. By researching the issues at each stage of the critical pathways that lead young people to aged care we can provide the evidence needed to create systems change that will solve this problem.


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August 2022

Development and preliminary evaluation of a novel participant-led video intervention to train disability support workers

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This paper describes the development and preliminary evaluation of a novel participant-led video (PLV) intervention to support people with disability (PWD) and cognitive and communication impairments to communicate their needs and preferences to their disability support workers. The PLV intervention was piloted with five primary participants with acquired brain injury and cognitive and communication impairments, five close other supporters and five facilitators. Analysis of interview data revealed the PLV to be a person-centred experience for primary participants that was structured around sense of self and included having a voice and taking control in directing their lives, personal growth through participation and feeling validated through the experience. The production and use of PLV training resources has much potential to improve the delivery of support and maximise support outcomes by enabling people with cognitive and communication impairments to have choice and control, set their own goals and direct their supports.


Citation:

Douglas, J., D’Cruz, K., Winkler, D., Topping, M., Bucolo, C., & Finis, C. (2022). Development and preliminary evaluation of a novel participant-led video intervention to train disability support workers. Health & Social Care in the Community, 00, 1–12.


July 2022

A more inclusive and just society for people with disability – Summer Foundation submission to the Disability Royal Commission

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The Summer Foundation welcomes the opportunity to make a submission to the Disability Royal Commission (DRC). It is crucial that outcomes of the DRC ensure a more inclusive and just society for all people with disability. Despite state, national and international mandates, many people with disability with high and complex needs are still not afforded their rights. They are often denied the opportunity to live where, how and with whom they want.

 

Significant reforms to the NDIS and health and housing interface systems are needed to uphold participants’ choice and control over their own lives and break the cycle of violence, abuse, neglect and exploitation when they are dependent on supports provided by others. Greater investment into person-centred decision-making is essential to ensure that participants can exercise their right to an ordinary life.


July 2022

“They treat you like a person, they ask you what you want”: a grounded theory study of quality paid disability support for adults with acquired neurological disability

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Description:

Support workers provide assistance across a range of activities, including daily and domestic living tasks, employment, housing and community participation. However, in Australia the support workforce is heavily casualised and under-trained, which can have negative impacts for people with disability. Furthermore, there is a lack of evidence on what constitutes ‘best practice’ in the area of disability support. New findings from interviews reveal the most important qualities of a ‘good’ support worker, which should be used to inform future policy and practice in the area.

 

You can read a summary here.

 


Citation:

Topping, M., Douglas, J., & Winkler, D. (2022). “They treat you like a person, they ask you what you want”: A grounded theory study of quality paid disability support for adults with acquired neurological disability. Disability and Rehabilitation.


May 2022

Moving to a new home checklist

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This checklist is written from the perspective of a person with a disability who is wanting to move to a new home. We know moving is a big task. There are many things to do, and many people may be involved in assisting a person with disability to move to a new home. This form might be completed by the person with disability and/or a trusted person such as a family member or support coordinator

 

Support coordinators and allied health professionals can learn more about supporting someone to move into a new home by attending our UpSkill workshop on this topic.


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May 2022

On-site shared support in Specialist Disability Accommodation – Discussion paper

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In 2021 the Summer Foundation held a series of workshops and interviews with on-site support providers, specialist disability accommodation (SDA) providers, and tenants living in SDA apartments. Preliminary findings from the workshops were published in May 2022, and the main findings were that there is scope for service redesign and innovation to improve the quality and efficiency of support.

We are seeking input from support providers for improving the preliminary report and recommendations. Please contact [email protected] by 30 June 2022.


September 2021

Factors that influence the quality of paid disability support for adults with acquired neurological disability: Scoping review and preliminary interview findings

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Theoretically, individualised funding schemes empower people with disability (PWD) to choose high quality support services in line with their needs and preferences. Given the importance of support, the aim of the scoping review and in-depth interviews was to understand the factors that influence the quality of paid disability support for adults with acquired neurological disability from the perspective of PWD, close others and disability support workers (DSWs). A comprehensive scoping review of the published literature from 2009-2019 was conducted on five databases. In-depth interviews were conducted with people with acquired neurological disabilities, close others and DSWs to obtain their perspective on what influences the quality of paid disability support.


Citation:

Topping, M., Douglas, J., Winkler, D., (2021). Factors that influence the quality of paid disability support for adults with acquired neurological disability scoping review and preliminary interview findings. Paper presented at the 6th Pacific Rim Conference of the International Neuropsychological Society, Australasian Society for the Study of Brain Impairment, and Australian Psychological Society’s College of Clinical Neuropsychologists.


October 2020

Factors that influence the quality of paid support for adults with acquired neurological disability: Scoping review and thematic synthesis

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Description:

This review aims to understand the factors that influence the quality of paid disability support for adults with acquired neurological disability. The findings provide insights to PWD hiring and managing support, and facilitate the delivery of quality disability support.


Citation:

Topping, M., Douglas, J., & Winkler, D. (2020). Factors that influence the quality of paid support for adults with acquired neurological disability: Scoping review and thematic synthesis. Disability and Rehabilitation.


June 2020

Chris’s story – everything’s changed

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Chris shares his journey from hospital to his new home and the value of having good support around you.


May 2020

Personal protective equipment needs of NDIS participants during COVID-19: Preliminary results

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People with disability, especially those with underlying medical conditions, are disproportionately vulnerable during COVID-19. A national survey conducted in April 2020 obtained the perspective of 351 National Disability Insurance Scheme (NDIS) participants on their personal protective equipment (PPE) needs. The 30 question survey was designed to inform a national strategy to source PPE and provide an accessible distribution pathway to NDIS participants.


Citation:

Winkler, D., Douglas, J., Rinehart, N., Jamwal, R., Bishop, G., & Jarman, H. (2020). Personal protective equipment needs of NDIS participants during COVID-19: Preliminary results. Summer Foundation.


February 2020

Living independently ‘Trevor chooses how he wants to live’

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Linda, Trevor’s Mum, shares how Trevor’s life has changed since he chose to live independently with support in an SDA apartment.


January 2020

Sharing stories of lived experience: A qualitative analysis of the intersection of experiences between storytellers with acquired brain injury and storytelling facilitators

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Description:

Sharing stories of lived experience of disability presents an opportunity for meaningful occupational engagement, enabling social connectedness and contribution to society. This paper reports on the intersection of experiences between those sharing their story and those listening to the story.


Citation:

D’Cruz, K., Douglas, J., & Serry, T. (2020). Sharing stories of lived experience: A qualitative analysis of the intersection of experiences between storytellers with acquired brain injury and storytelling facilitators. British Journal of Occupational Therapy.


December 2019

Understanding the factors that influence the quality of paid disability support for adults with acquired neurological disability and complex needs: A scoping review protocol

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Description:

Adults with complex needs often require paid support to enable them to exercise choice and control and participate fully and effectively in society. Given support is so critical for this population, this review aims to further understand the factors that influence the quality of paid disability support for adults with acquired neurological disability and complex needs.


Citation:

Topping, M., Douglas, J., & Winkler, D. (2019). Understanding the factors that influence the quality of paid disability support for adults with acquired neurological disability and complex needs: A scoping review protocol. BMJ Open.


October 2019

Ben’s journey to independence

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Cheryl and Gary describe their son, Ben’s journey to independence.