My name is Tammy Milne and I live in Tasmania. I was born with Arthrogrophosis multiplex congenita, which basically means the muscles and bones in my legs, shoulders and throat are weak and malformed. I am 60 years old and wear it as a badge of honour to have survived this long.
Meet Tammy and read about the impact good supports have on her life
Since 2006 the Summer Foundation has been working to stop younger people with disability being forced into aged care.
In collaboration with other organisations, we have helped 7,500 young people with disability avoid residential aged care.
It is now accepted that residential aged care is not suitable for young people with disability. The proposed changes to the Aged Care Act will strengthen this position by making it more difficult for people under 65 to access funding for residential aged care.
Yet the problem of finding appropriate housing and support for people who require access to 24/7 support remains.
The only option for many of these people is to live in group homes where the support is often poor quality, expensive, and puts people at increased risk of violence, abuse and neglect.
Our research and experience shows that better outcomes are possible and affordable for government. People with complex support needs have the right to equitable and inclusive housing, support and services.
We are home to one of Australia’s leading disability research teams.
We want to build on this evidence base by collaborating with people with disability and like-minded organisations, including universities, technology innovators and service providers, to deliver better housing and living solutions for the more than 40,000 Australians with disability who need access to 24/7 support.
Young people in residential aged care will always be important to us, and are part of the more than 40,000 Australians with disability who need better housing and living solutions.
Our work will continue to be evidence based and co-designed with end-users.
We are excited about our new direction. We aim to set a new standard in housing and living supports – one that lifts expectations of what a good life and future can look like for Australians with disability with high support needs.
On the NEW episode of Reasonable & Necessary, Dr George meets Dr Sam Bennett from the Grattan Institute to discuss his new report on reforming NDIS housing and support: https://grattan.edu.au/report/better-safer-more-sustainable-how-to-reform-ndis-housing-and-support/
He is also joined by Nicole Cox from MyPlace, an organisation that has been supporting people with disabilities to establish and maintain individualised home and living solutions for almost 30 years.
How can we help more people with disabilities escape from group homes and live more inclusive lives in the community? Let’s find out!
Listen to the podcast on SoundCloud, Apple Podcasts or Spotify.
A Summer Foundation report released today identifies innovative examples of housing and living options both in Australia and overseas that are delivering better outcomes for people with disability.
Despite the significant investment in the National Disability Insurance Scheme (NDIS), many people who need access to 24/7 support are still living in group homes where the support is often poor quality, expensive, and puts people at increased risk of violence, abuse and neglect.
Both the Disability Royal Commission and the NDIS Review called for urgent reform in housing and living supports to address poor outcomes and significant cost pressures on the NDIS.
The cost of Supported Independent Living has increased by 26% annually over the past 2 years, from $8.8 billion to $14 billion.
The Summer Foundation’s Innovation in housing and living for people with disability: Environmental scan report, has identified promising models of innovation that can create alternative options to group homes, spanning housing, support and technology.
The report shows that while there are only pockets of innovation in Australia, other countries have managed to scale up innovative models of housing and living supports that are delivering better outcomes for people with disability, and are more cost-effective.
The scan identified 23 Australian and international examples of innovation in housing and living, including:
- Host arrangements: A person with disability is matched with an approved carer who has a spare room in their home. The participant shares in the host’s family and community life (UK, US and WA)
- Home-share arrangements: A person needing support has a home with a spare room and offers it for free or at low-cost rent to a ‘home sharer’ in exchange for some informal or occasional support (Australia, UK, Canada).
- Night Time Attendant Care: Mobile team of support workers operating overnight, providing drop in support to assist with transfers, repositioning and medication assistance, and other services that may enhance comfort overnight (QLD, VIC and NSW).
The models in the report were found to be more individualised and inclusive than group homes and were suited to the population of NDIS participants.
Summer Foundation CEO, Dr Di Winkler AM, said the scan suggested there is potential to use a combination of models to improve the quality and cost-effectiveness of housing and living support delivered in Australia.
“While technology has transformed service delivery in most other industries, the way support is delivered in disability housing has changed little over the past two decades,” Dr Winkler said.
“The National Disability Insurance Agency has an important role to play encouraging investment in technology and guiding the market towards its use.
“The reform of the NDIS needs to make sure that policy, regulation and the pricing framework support the scaling of models that deliver positive outcomes for participants that are affordable for government.”
Dr Winkler said there is an urgent need to pilot and scale more innovative and contemporary models of housing and support that deliver better outcomes for people with disability and the government.
“Without innovation and disruption in the way support is delivered in disability housing and support, there is little hope of achieving the radical change in quality needed,” Dr Winkler said.
“We need the government and the sector to embrace innovation and be prepared to do things differently to deliver better outcomes for Australians with disability who have high support needs.”
Read the Innovation in housing and living support for people with disability: Environmental scan report.
The Summer Foundation is an Australian organisation investing in identifying, designing and scaling up great ideas that deliver better housing and living solutions for Australians with disability who need access to 24/7 support.
We are pleased to announce the appointment of Dr John Daley AM and Jo-Anna Camilleri-Olin to the Summer Foundation Board.
Summer Foundation is embarking on an ambitious new agenda to invest in identifying, developing and scaling up better housing and living solutions for the 40,000 Australians with disability who need access to 24/7 support.
We are home to one of Australia’s leading disability research teams. We want to build on this evidence base by collaborating with people with disability and like-minded organisations, including universities, technology innovators and service providers, to deliver solutions for Australians with disability with high support needs.
We are excited and privileged to have John and Jo-Anna join the Board at this exciting time for the organisation.
John is one of Australia’s leading public policy thinkers. He was the founding Chief Executive of the Grattan Institute from 2009 to 2020, which he led to become Australia’s leading domestic policy think tank.
John is now an independent strategy consultant, combining policy, economics and business insights. Previously John was a partner at EY Port Jackson Partners, the Group General Manager of Strategy at ANZ Bank, Managing Director of E*TRADE Australia, and also worked at McKinsey and Co, the University of Melbourne, the University of Oxford, and the Victorian Department of Premier and Cabinet.
John graduated from the University of Oxford with a doctorate in public law after completing undergraduate degrees in law and science at the University of Melbourne.
Jo-Anna Camilleri-Olin is a program leader at Atlassian, with broad domestic and international industry experience across technology in Banking, Education and Government. Having served listed and community-owned organisations in Australia and the United States, multinationals and universities, Jo-Anna has worked at the intersection of innovation, technology and product for over 20 years.
Jo-Anna holds a Bachelor of Business (Marketing / Economics) (Hons) from Swinburne University, a GradDip Applied Science (Human Services Research) from RMIT and a Masters in Business Administration (MBA) from the University of California (Davis). Jo-Anna also brings lived experience of disability.
Source: The Conversation – Dr Dianne Winkler and Dr George Taleporos
You might think having a list of things that are “in” or “out” seems like a pragmatic way to contain the costs of the NDIS. But a lengthy government proposed list of exclusions could force people with disability to use more costly services. It might also exclude people from mainstream services and force them into segregated settings. This is contrary to the very intent of the NDIS – to promote the participation and inclusion of people with disability in the community.
In an article for The Conversation, Summer Foundation CEO, Dr Di Winkler and Dr George Taleporos argue that prescriptive lists can stymie independence and innovation.
On this episode of Reasonable & Necessary, Dr George meets Sam Paior from The Growing Space and Chris Coombes from DSC. They discuss the Government’s attempt to redefine what the NDIS will pay for.
They examine the draft lists of NDIS supports and consider what should and should not be included. They also discuss some of the unintended consequences of narrowing the definition of an NDIS support.
Listen to the podcast on SoundCloud, Apple Podcasts or Spotify.
Source: ABC News – Sam Nichols
ABC News have reported on Building Better Homes rally against the NSW government, as we call for measures to ensure new residential dwellings in the state meet mandatory “Silver Level” Livable Housing Design standards.
“We deserve to have our government uphold our basic human rights as those who deserve housing,” Julie Charlton told the ABC. Julie is a wheelchair user who was born with spina bifida, and will attending the rally in Sydney’s CBD today.
In 2022, the National Construction Code introduced a mandatory standard in accessibility. However, NSW is one of two jurisdictions that has chosen not to opt in.
A new campaign has been launched to stop the New South Wales Government discriminating against people with disability and older Australians.
The NSW Government is one of only 2 state governments that have refused to sign up to mandatory accessibility standards for new houses.
Building Better Homes is a coalition of peak bodies and agencies working to secure mandatory accessibility standards in new developments across Australia.
On this episode of Reasonable & Necessary, Dr George meets with Disability Discrimination Commissioner Rosemary Kayess. They chat about her fight for disability rights on the world stage and what she thinks about changes to the NDIS back home. They also cover the disability Royal Commission and the Disability Discrimination Act.
Rosemary calls for minimum accessibility standards for all new housing, an end to segregation, and a human rights-based approach across all government policy.
Listen to the podcast on SoundCloud, Apple Podcasts or Spotify.
A new campaign has been launched to stop the New South Wales Government discriminating against people with disability and older Australians.
The NSW Government is one of only 2 state governments that have refused to sign up to mandatory accessibility standards for new houses.
The Summer Foundation is well known for excellence in bringing the voice of lived experience to its work, so it is exciting to see that the team is expanding their remit. This has seen a range of external clients commission this service.
The Co-design team works to improve the housing and living experiences of people who require access to 24/7 support by enabling creative, user led system and service solutions and innovations.
The team brings a unique set of skills that allow them to specialise in unpacking and understanding complex problems and create co-designed solutions with people with complex support needs.
The team, led by Carolyn Finis, works with people with lived experience to shape genuine user led solutions, by overcoming barriers which often prevent the translation and application of that experience.
Co-design Lead Carolyn Finis says: “We know that future innovation in the disability sector will have co-design at its core, so to be leading one of the few teams that offer genuine co-design is a real privilege. Seeding new innovations that have people with disability at the centre of the design is very exciting.”
We’ll be in touch with more information about our co-design service shortly, or visit our website to find out more, including if you are interested in becoming a lived experience partner.
There has been much discussion and debate in the community about reforms to the NDIS currently before Parliament. We know how important the NDIS is to people with disability and understand the anxiety and concern about the future of the NDIS in the disability community.
The Building Better Homes Campaign is calling for an end to housing discrimination against people with disability and older Australians in NSW.
Welcome to our latest newsletter.
The Building Better Homes Campaign is calling on the NSW Government to end housing discrimination against people with disability.
For the past two years the NSW Government is one of only two state governments that has refused to sign up to the liveability and accessibility standards mandated in the National Construction Code – a set of design standards that require new housing developments to offer basic accessibility for all people.
These standards are not a lot to ask – they simply require developers to include things like a step free shower and level entry to the home.
The new campaign push is calling on the NSW Government to stop housing discrimination against people with disability and older people.
Over the past couple of months, the disability community has been focused on the NDIS Amendment Bill currently before Parliament. It is critical that the Bill supports positive reform to the Scheme to ensure it delivers better outcomes for people with disability (Read more here).
This month, the Summer Foundation launched our expanded co-design services. The expansion is a natural progression of our widely recognised excellence in bringing the voice of lived experience to our work.
As we head into the last 6 months of the year it looks increasingly unlikely that the government will meet its target of having no people aged under 65 living in aged care by 2025. I’ve written more about this in my latest piece for The Conversation, you can read it here.
There has been a welcome 31% decrease to 1,470 younger people living in aged care at the end of 2023. But this is largely due to people dying or ageing out of the Younger People in Residential Aged Care (YPIRAC) cohort.
It is also important to note that moving out of aged care does not guarantee better outcomes for younger people with disability. In 2023, 89 people moved out to group homes. We must work with the government and the sector to ensure better housing outcomes for people who need access to 24/7 support.
We’ll be talking about this at our Annual Public Forum – Fulfilling the NDIS promise in housing and living: Innovation starts today – coming up on 17 October. Save the date!
I look forward to seeing you there.
Di Winkler CEO and Founder
View all articles in this issue
Exciting growth in co-design services
The Summer Foundation is well known for excellence in bringing the voice of lived experience to its work, so it is exciting to see that the team is expanding their remit, which has seen a range of external clients commission this service.
NDIS Amendment Bill update
There has been much discussion and debate in the community about reforms to the NDIS currently before Parliament. We know how important the NDIS is to people with disability and understand the anxiety and concern about the future of the NDIS in the disability community.
End housing discrimination in NSW
The Building Better Homes Campaign is calling for an end to housing discrimination against people with disability and older Australians in NSW.
Calling all NDIS participants who are housing seekers
The housing specialists at the Housing Hub have created a new peer support group on Facebook for participants wanting to discuss and share their housing journey with others.
Reasonable & Necessary latest episode –Amending the NDIS Bill: What’s Happened, What’s Missing & What’s Next?
Our latest episode of Reasonable & Necessary is available for you to download and listen to. Dr George meets with disability rights advocate El Gibbs and disability law expert Mitchell Skipsey to discuss the NDIS Bill, the recent amendments and what is needed to ensure that the NDIS Bill meets the needs of NDIS participants.
Save the date – Summer Foundation’s 2024 Annual Public Forum
We are pleased to announce that this year’s Annual Public Forum will be held on Thursday 17 October. Since 2013, the Summer Foundation has proudly hosted the Annual Public Forum, providing a platform for engaging conversations on topical issues aligned with our strategic objectives.
Meet Tania
My name is Tania Lewis, I am 52, I’ve been married to my hubby Lenny for 35 years. He is my best friend in life, we have known each other since we were little. Together we managed to create our daughter, she is beautiful, she is 25 now and is doing her own life. Life hasn’t always been great for us.
Resource highlight – Key NDIS roles and how they can support you
Our resource Key NDIS roles and how they can support you provides an overview of the roles of LACs, planners and support coordinators, and how they can support you.
The housing specialists at the Housing Hub have created a new peer support group on Facebook for participants wanting to discuss and share their housing journey with others.
The NDIS Housing Peer Support Group is a closed Facebook group and is hosted and moderated by the Housing Hub admin team who are NDIS participants with personal experience of finding a suitable home.
If you are an NDIS participant going through your housing journey and would like support from others with similar experiences, this group is for you!
Our latest episode of Reasonable & Necessary is available for you to download and listen to. Dr George meets with disability rights advocate El Gibbs and disability law expert Mitchell Skipsey to discuss the NDIS Bill, the recent amendments and what is needed to ensure that the NDIS Bill meets the needs of NDIS participants.
The guests highlight the importance of constraints on the NDIA’s information gathering powers and the need for strengthening avenues for appeals. They also highlight the importance of considering the whole person in determining support packages. They explain what happens next and express hope that the Senate committee will recommend further amendments to address the concerns of the disability community.
We are pleased to announce that this year’s Annual Public Forum will be held on Thursday 17 October.
Since 2013, the Summer Foundation has proudly hosted the Annual Public Forum, providing a platform for engaging conversations on topical issues aligned with our strategic objectives. We are currently preparing for this year’s Forum. The confirmed topic is:
Fulfilling the NDIS promise in housing and living: Innovation starts today
This topic will allow us to showcase innovative housing and living models and discuss necessary policy reforms to drive urgent changes in this critical area. We’ll be joined by a panel of housing and living experts, including participants, providers, academics and government officials for the discussion. This is a free event.
Save the date:
Date: Thursday 17 October
Time: 12pm – 1:30pm
Venue: NAB Arena, Docklands and online
Look out for the official invitation and booking instructions soon.
We look forward to seeing you all there!
Watch a video of last year’s highlights below.
Tell us about yourself?
My name is Tania Lewis, I am 52, I’ve been married to my hubby Lenny for 35 years. He is my best friend in life, we have known each other since we were little. Together we managed to create our daughter, she is beautiful, she is 25 now and is doing her own life. Life hasn’t always been great for us. Sickness happened and got in the way of our life, I guess you could say. I had a stroke at 39, due to that I ended up in aged care.
How did you first connect with the Summer Foundation?
I met the Summer Foundation at a forum in Newcastle when I was living in aged care. They just happened to be at the table that I sat at, and you know everyone yaps at those things. They seemed to have the belief that I have, that people with disabilities should not be forgotten, we’ve all got purpose in life no matter how hard we do it.
We first met you over 11 years ago, how is life for you now?
When we met I was living in aged care, now I am living with my beautiful hubby and daughter in an SDA home. I am a casual employee with the Summer Foundation and I also have part time employment with another company called Community Disability Alliance Hunter. I am on the board of an indigenous corporation and I try to get involved in any work or events in the community.
You started off as a volunteer with Summer Foundation, now you are employed as a casual working across a couple of co-design projects. Can you tell us about this work?
The most recent work I am doing with Summer Foundation is at a very crucial time. A lot of companies are now seeing the value of lived experience from people with disabilities. The Summer Foundation is going to draw from our lived experiences to create solutions together.
Why do you share your experience and insights?
The power of peer support has taught me, if you don’t share what you know, how is anyone else ever going to learn from it or see it as a way forward. You know, someone sees you doing something and says “wow they can do that and they are in a wheelchair and they’re smashing goals and they’re trying and they are giving it a go, maybe we can do it.”
Sharing what I have been through and what I know, it is who I am. It is a passion of mine now.
Do you have any advice for others thinking about connecting with the Summer Foundation and sharing their knowledge and experience?
Just come along (to workshops), pop your head in and have a listen. Listening is good sometimes, absorbing what others are doing until you feel comfortable to share. They never put pressure on people. The Summer Foundation has always put people first and put people with disabilities first. They do it 100% right. I would do anything to help them because they have changed my life – through their eyes I have been able to see other people’s lives and seen life through others’ eyes. So go and pop your head in, I reckon.
If you are interested in sharing your story, please get in touch with us at:
livedexperience@summerfoundtion.org.au
Our resource Key NDIS roles and how they can support you provides an overview of the roles of LACs, planners and support coordinators, and how they can support you.
On this episode of Reasonable & Necessary, Dr George meets with disability rights advocate El Gibbs and disability law expert Mitchell Skipsey to discuss the NDIS Bill, the recent amendments and what is needed to ensure that the NDIS Bill meets the needs of NDIS participants.
The guests highlight the importance of constraints on the NDIA’s information gathering powers and the need for strengthening avenues for appeals. They also highlight the importance of considering the whole person in determining support packages. They explain what happens next and express hope that the Senate committee will recommend further amendments to address the concerns of the disability community.
Listen to the podcast on SoundCloud, Apple Podcasts or Spotify.
Source: The Conversation – Dr Di Winkler
The Federal Government is unlikely to meet its target of getting every younger person out of aged care by next year.
In an article for The Conversation, Summer Foundation CEO Dr Di Winkler welcomed the 31% decrease in the numbers of younger people in aged care but said it was largely due to people dying or ageing out of the YPIRAC cohort. She explores the issues behind the numbers.
Five years ago, the target seemed achievable. The policy change is a hollow victory for the hundreds of younger people in aged care and families who have told their stories to Senate inquiries, the Disability Royal Commission, and the media to advocate for change.
The design flaws in the NDIS urgently need to be fixed to incentivise the delivery of high quality and cost-effective housing and living supports.
Better is possible and affordable by leveraging a range of technology to enhance or replace paid workers and foster greater independence and social and community connection.
Hopefully the amendments to the NDIS legislation which will support the introduction of ‘flexible budgets’ will be a positive first step in building a scheme that drives innovation and delivers better outcomes for YPIRAC and other people who need access to 24/7 support.
Are you a person with a neurological condition?
What does good peer support look like to you?
What is the study about?
The Summer Foundation and La Trobe University are doing a study to try and understand what makes great peer support. We want to talk to people with disability to hear about their views and experiences.
Your views and experiences will help us understand what good peer support looks like. This can help shape the future of peer support practices and will ensure peer support programs are as valuable as possible.
Who can participate?
We are looking for people who have any amount of experience with peer support. Even if you have limited experience with it, we still want to speak with you.
We’d like to learn from people who:
- Have acquired a disability due to a neurological injury or a neurological condition, for example an acquired brain injury such as a stroke, traumatic brain injury, Parkinson’s disease, multiple sclerosis
- Have acquired the disability at least 2 years ago
- Have acquired the disability between the ages of 18-63 years
- Are currently aged 20-65 years
- Are an NDIS participant
- Can participate in an interview
- Can provide informed consent
What should you know?
Being part of this study is voluntary. If you decide not to participate this won’t affect your relationship with La Trobe University, the Summer Foundation or any of the team members.
If you decide to be part of the study, you will participate in a 1:1 interview with Cornelia Wellecke, one of our graduate researchers.
In the interview, she will ask you about your experiences and perspectives on peer support. You can share whatever you feel comfortable sharing.
The interview will last about an hour and will be conducted online via Zoom, in person or via telephone, depending on your preference.
You will receive a $50 gift voucher to thank you for your time and for sharing your experiences.
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How can I get involved in this research?
If you would like to participate, please email C.Wellecke@latrobe.edu.au or call 0456 115 141 or fill out the form below.
We will arrange a phone call or Zoom call with you to provide further information on the study. You will also be asked a few questions about your background.
Research Team
| Role | Name | Role |
| Principal Investigator | Prof Jacinta Douglas | La Trobe University Summer Foundation |
| Co-Investigator | Dr Di Winkler | La Trobe University Summer Foundation |
| Co-Investigator | Dr Mark Brown | La Trobe University Summer Foundation |
| Co-Investigator | Dr Gary Annat | La Trobe University Summer Foundation |
| Co-Investigator | Cornelia Wellecke | La Trobe University Summer Foundation |
This research is being funded by the Summer Foundation and La Trobe University.
On this episode of Reasonable & Necessary, Dr George meets with Greens Senator Jordon Steele-John to understand his position on the changes to the NDIS legislation that are currently before Parliament.
The Senator expresses concerns and why he believes these changes will negatively impact participants. He explains his thinking behind this position and why the changes may result in less choice and control for NDIS participants.
Listen to the podcast on SoundCloud, Apple Podcasts or Spotify.
The National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 presents a valuable opportunity to realise an improved NDIS that is less adversarial and more fit-for-purpose. Without timely legislative reform which more clearly articulates who the Scheme is for, the funding each person receives and how it can be used, the Scheme is at risk of not delivering on its vision.
The Summer Foundation’s submission on the Bill makes 6 recommendations. These include the Government fulfilling its commitment to meaningful engagement and co-design with the disability community on the development of NDIS Rules and legislative instruments, and the implementation of the legislation.
The 47th annual Australasian Society for the Study of Brain Impairment (ASSBI) conference was held in Sydney on May 2 – 4. We had 6 of our researchers presenting at the conference on a range of topics. These included the experience of the built environment for people with complex needs and disability, mental wellbeing in individualised housing, hospital discharge planning and individualised housing and supports for individuals with multiple sclerosis.
Dr Kate D’Cruz (pictured above) presented the findings of a study on co-designing with people with neurological disability and talked about the obstacles and opportunities for authentic, collaborative practice.
Co-design was a prominent theme of the conference embracing the importance of the voice of individuals experiencing and impacted by neurological disability.
The conference was an incredible opportunity to share our research with peers and colleagues. Our research team are always excited to share our research findings please reach out if you have any questions research@summerfoundation.org.au.
Research library
Browse our wide range of research reports and journal articles.