“They treat you like a person, they ask you what you want.”
That is what quality paid disability support looks like according to new research by the Summer Foundation and La Trobe University.
Understanding what quality support looks like
The Summer Foundation would like to thank Selina Short for her service as a Director on the Summer Foundation board. Selina joined the Board on 17 November 2020.
We wish Selina the very best and thank her warmly for her service to Summer Foundation.
We are investigating the role of support coordinators and how they can effectively assist people with disability and complex needs.
The Conversation – Megan Topping & Jacinta Douglas
When the National Disability Insurance Scheme (NDIS) was established almost a decade ago, it was envisaged people with disability would be empowered consumers. It was hoped their customer insights would shape new services designed to meet their specific needs and preferences.
Latest episode
What does good NDIS support look like?
VIDEO PODCAST: 19 September 2022
In this episode of Reasonable and Necessary, Dr George speaks with Megan Topping (La Trobe University PhD research student) and Carl Thompson (NDIS participant and director of support coordination provider ‘Sort Your Support’) about what NDIS participants really want from support workers.
You can download and listen to the audio version on SoundCloud, iTunes (Apple Podcasts) or Spotify.
Source: 7.30 Report (ABC) – Lauren Day & Laura Kewley
We’ve all heard about the shortage of hospital beds across the country but in fact, there are hundreds that could be available if they weren’t being used by patients who are technically well enough to go home but can’t.
Around 1,500 Australians with disabilities are waiting to be discharged from hospital but they can’t because of NDIS delays.
LATEST PODCAST EPISODE:
In the latest episode of Reasonable and Necessary, Dr George Taleporos speaks to new NDIS Minister Bill Shorten . He discusses what he’s learned about the NDIS since taking over, and what he’s going to do to rebuild it now that he’s in charge.Minister Shorten has promised to fast track decisions, get people out of hospital, get rid of the lawyers and put people with disabilities in charge, in this in-depth interview.
It’s Brain Injury Awareness Week!
Meet James – he has been living with a brain injury for 18 years. He writes about his experience and explains why Brain Injury Awareness Week is important to him.
Hi, my name’s James. I’m 38 years old and I have an acquired brain injury. Before my brain injury I was a rugby league and cricket representative player. I was socially included, I had a heap of friends.
After acquiring my brain injury, I found that people fell away. They heard that I had a brain injury and they were not willing to hang around to see how bad the injury is.
Many people hear the word brain injury and they look at you and think, ‘Oh they have a brain injury, they’re a lot worse than I am, they are not worthy of my time, they aren’t able to make clear decisions’.
What would you like people to know about living with an acquired brain injury?
I am not defined by my brain injury. Each and every day that passes my brain heals. In my mind, everyone has an injury of some sort to their brain. Everybody is different in their personality, in their way of thinking, in every brain function there is. I had a traumatic brain injury on the right side of my brain. Other people have challenges in other parts of their brain, brain injuries from years of neglect or brain injuries from psychological or physical abuse.
Why is Brain Injury Awareness Week important?
It is important to show people that brain injuries don’t define people.
The extent of a brain injury doesn’t determine or define the person’s life. People are so much more than this, this is what we need to look at, people as people.
The theme of Brain injury Awareness Week this year is ‘Life is bigger than a brain injury’. What does this mean to you?
The brain injury is a small part of my life, I have so much more going on than a brain injury. I have hobbies and am involved in community groups. I have completed a couple of TAFE courses. This would have been unbelievable to the support looking after me at the beginning of my recovery.
I have also found new, more valuable friends.
The brain injury doesn’t define me, I make sure it doesn’t define me. I make sure I excel to prove to myself and others that the brain injury category is not the only category I am placed in.
You can watch James Nutt’s digital story here. Find out more about Brain Injury Awareness Week here.
Source: The Conversation – Di Winkler
Eighteen months ago, a Melbourne woman named Leila had a stroke and went to a local hospital. After medical support over a few weeks, Leila was ready to be discharged from the hospital, but required some specialist support due to her disability.
Source: Herald Sun – Jade Gailberger
Taxpayers are paying tens of millions of dollars for healthy patients who are stranded in Victorian public hospital beds due to a bureaucratic mess.
Source: The Conversation – Kate D’Cruz & Mark Brown
It is nearing ten years since the National Disability Insurance Scheme (NDIS) was legislated in the dying days of the Gillard government. Not only was there bipartisan support for the NDIS, the reform came about on the back of a grassroots campaign from the disability community.
LATEST PODCAST EPISODE:
In research by the Summer Foundation and La Trobe University, participants revealed that their relationship with the NDIA needs repairing – most had lost confidence and trust in the NDIA. Many recognised that they can’t opt out of this relationship, so with the appointment of a new government, many participants are optimistic that the time may be right for an honest dialogue between all parties about the future of the NDIS.
Outcomes and Experiences of People with Disability Moving into New Housing
What is the study about?
The aim of this research is to help us better understand the individual experiences and outcomes of people with disability who move into Supported Disability Accommodation (SDA) housing in the community. This project involves collecting information from interviews and questionnaires with tenants and those close to them pre-move and at regular intervals up to 3 years post-move.
Why are we doing this study?
We are doing this research to find out more about the experiences and outcomes of people with disability who move into appropriately designed housing in the community. We are interested in finding out what works well for people and what could be improved so we can inform the development of future housing and services. Our research will document the lived experience and impact of new housing developments for young people with disability and help to shape innovative housing models in the future.
Who do we want to take part?
Taking part in this research study is optional. We are looking for people who:
- Are aged 18-65
- Have disability. Primary disabilities include (but are not limited to): Acquired brain injury, spinal cord injury, cerebral palsy, muscular atrophy, muscular dystrophy, multiple sclerosis, Huntington’s, other neurological conditions
- Have an offer of an SDA house or apartment and/or have been living in SDA for up to 6 months
- Speak/understand English
- Have adequate communication skills to independently agree to participate. Adequate communication skills include using a variety of ways to communicate including verbal or written communication, verbal prompts, repetition and rephrasing of information or augmentative communication devices
You will be offered a $30 gift card for each time point you complete, as a reimbursement for your time. This will be provided after you complete the interview(s) for a time point. If you choose to withdraw from the study, you can keep the gift cards you have been given.
How can I get involved in this research?
If you are interested in participating in this study, please email Dr Peter Mulherin at peter.mulherin@summerfoundation.org.au or complete the form below.
A member of the Summer Foundation Research Team will then contact you to explain the project in more detail and, if you are interested in participating, arrange a time for an initial interview.
To be eligible to participate in the study, you will be required to be able to independently agree to participate. After written consent is obtained, you will be considered part of the research project. All the information you provide during interviews will be de-identified and assigned a unique code.
Research Team
| Role | Name | Role |
| Chief Investigator | Prof Jacinta Douglas | La Trobe University |
| Co-Investigator | Dr Di Winkler | Summer Foundation |
| Co-Investigator | Dr Kate D’Cruz | Summer Foundation |
| Co-Investigator | Dr Stacey Oliver | Summer Foundation |
| Co-Investigator | Dr Peter Mulherin | Summer Foundation |
| Co-Investigator | Dr Elroy Dearn | Summer Foundation |
| Co-Investigator | Jacqui Naismith | Summer Foundation |
| Co-Investigator | Katherine Ganzon | Summer Foundation |
| Co-Investigator | Fiona Carey | Summer Foundation |
| Co-Investigator | Nancee Biviano | Summer Foundation |
This research is being funded by the Summer Foundation and conducted with La Trobe University.
The Housing Hub wants to help people with disability find the right home. To do this, we want to make sure people have access to all the information they need. We host free events and online learning packages to help give people information about NDIS Housing Options.
In the past 3 months, the Summer Foundation has led an alliance of more than 130 organisations across the disability, health and housing sectors in calling for faster and more accurate decisions on housing for NDIS participants.
The Summer Foundation and People with Disability Australia (PWDA) are researching the NDIS experiences of people with disability, their families and close supporters. The survey results will be presented to Minister Shorten, the NDIA and the government to address the current challenges.
The Down to 10 days campaign used a range of media and social media platforms to create awareness of the campaign and highlight stories of lived experience and the impact of delayed NDIA decisions.
A new report shines a light on the increasing number of hurdles being put in front of NDIS participants in order for them to receive housing support.
The Summer Foundation has appointed a new chairman of its Board.
Chris Leptos AO brings a wealth of corporate and government experience to the role. His experience
in the housing sector combined with his work advising state and federal governments provide him with perfect qualifications to be Chairman of our Board.
He is an experienced company director and is Chairman of the National Heart Foundation, a Non-Executive Director of IDP Education Limited, and Senior Adviser to Flagstaff Partners.
Chris has a strong interest in social impact and systems change, and shares our fundamental belief that young people in aged care is a solvable issue.
In 2000 Chris was honoured as a Member of the Order of Australia for services to business and the community, and in 2022 was honoured as an Officer of the Order of Australia for services to the not for profit sector.
We welcome Chris and convey our sincere thanks to outgoing Chairman Paul Conroy who has supported the work of the organisation for more than a decade.
In his time as Chairman Paul guided the Board through an extensive renewal program and significantly increased the lived experience of disability among Directors. Paul concludes his responsibilities with the Board at the end of June.
The Collaborative Support Approach Tool outlines the cooperation between support coordinators, aged care staff, allied health professionals and other stakeholders working together to assist a younger person to leave aged care.
What would you like to share with readers about yourself?
My name is Connor, I am 19 years old and moving into an SDA apartment soon. My disability is Friederichs Ataxia. I have dog named Gus who is 8 months and hoping to move in with me if he behaves.
As part of the Summer Foundation-La Trobe University Research Programme, in recent months we have published several journal articles and reports, and presented at academic conferences.
We’ve been looking at issues such as hospital discharge, accessible housing regulations, NDIA decision-making, support coordination, and the impact of living in SDA.