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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
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:
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.
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.
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.
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.
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.
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.
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.
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.
As Rick says, home wasn’t built in a day, but he shares some valuable tips after his recent move into his own SDA apartment.
Welcome to our May newsletter.
While new legislation is urgently needed to get the NDIS back on track, these changes are also creating uncertainty for people with disability and families.
The Summer Foundation is working to make sure that NDIS 2.0 works for people with disability who need access to 24/7 support. Our latest article in The Conversation addresses concerns regarding choice and control related to housing and the NDIS Review recommendation that on average support in disability housing be funded at a 1:3 ratio i.e. 1 support worker supporting 3 people with disability. Read more here.
Dr George continues to help us all make sense of proposed disability reform by interviewing a range of experts and asking great questions. The latest episode of Reasonable & Necessary helps demystify the draft NDIS legislation.
ABC News and ABC Radio’s The World Today reported last week on the Summer Foundation’s latest research, which explores the views of building and design sector professionals when integrating accessible design standards into new housing. The research supports the Building Better Homes campaign in advocating for all Australian states to sign up to the mandatory construction code that specifies 7 accessible standards for all new homes.
You can also read about our latest published research here.
For me, the highlight of this newsletter is the article by Katy Skene sharing her story and her experience of working with our Co-design team.
I hope you enjoy reading about our ongoing work.
The research team has had several papers published in peer-reviewed journals this year.
Megan Topping’s “Building an evidence-based multi-level system of quality disability support for adults with acquired neurological disability” was published in Disability and Rehabilitation in February.
The paper brings together the perspectives of people with acquired neurological disability, disability support workers and close others on what quality disability support looks like.
It highlights the importance of people having real choice around their supports and the opportunity to recruit, train and manage their support workers to ensure they receive quality support. You can read a summary of the research here.
A scoping review of 16 studies that looked into hospital discharge outcomes for people with acquired disability and complex needs was also recently published in Brain Impairment.
“‘Well, what are you going to do when you’re out there?’: a scoping review of successful hospital discharge for people with acquired disability and complex needs aged 18–65 years” identified 4 main themes for successful hospital discharge – coordination and continuity between health professionals, preparation for hospital discharge, tangible supports on discharge, and involvement of the person with disability and close others.
The research also made several recommendations for ways to improve the hospital discharge process. You can read a summary here.
A desktop scan Resources to assist NDIS participants to understand their rights, make complaints and raise issues with a supported accommodation provider – Desktop scan report has been published on our website.
The scan looks at resources to support residents to be informed about rights, to stay safe, speak out and to raise issues or concerns when living in supported accommodation. You can read a summary of the report here.
Summer Foundation CEO Dr Di Winkler and La Trobe University’s Professor Jacinta Douglas explore questions around the NDIS Review recommendations in their latest article for The Conversation.
Proposed legislation that delivers fair, flexible and consistent funding would contribute to the sustainability of the scheme by enabling participants to adjust their supports, save and roll over funds. The legislation also includes ways people with disability may be afforded housing rights most people take for granted, such as choosing a home and housemates.
Dr Winkler and Professor Douglas argue that policy makers have incorrectly assumed people with disability need to live together for efficiencies to be made. The recommendation of 1 support worker to 3 participants has worried the disability community and there are concerns this will be used to reduce the cost of NDIS plans.
Innovation to redesign services and build contemporary disability housing is urgently needed to increase the quality and reduce the cost of support.
Research has already shown that co-located single occupant housing positively impacts wellbeing, community integration and independence. Better data on housing and support needs and preferences for people who require 24/7 support is needed to foster a user-driven market.
This data could inform NDIS policy that incentivises user-led services that will improve quality, efficiencies and outcomes for NDIS participants.
You can read the full article here.
ABC News has reported on the Summer Foundation’s latest research that explores the views of building and design sector professionals when integrating accessible design standards into new housing.
Disability advocates say standardised national accessibility standards are crucial, with many people living with disability forced to live in inappropriate situations because of a lack of accessible housing.
“The features we’re talking about are not a big ask, and we’ll just end up with better quality housing that is future-proof,” Summer Foundation CEO Dr Di Winkler told ABC News.
The key features in the mandatory design standards include level access entryways, a step-free entry to the home, a step-free shower recess, wall reinforcement around the toilet for future grab rail installation, stairways designed to reduce the likelihood of injury and enable future adaptation, wider door frames and halls, and a toilet on the ground level.
The research found that the sector is optimistic about implementing accessible designs, but requires more training for builders and architects from peak representative bodies. Industry members need to be supported by peak bodies with the changes and the distribution of consistent resources and practical guidance.
The Disability Royal Commission and the recent NDIS Review recommended the NSW and WA governments sign up immediately to the standards (see LinkedIn post).
The Building Better Homes campaign needs your help to encourage the NSW and WA governments to sign up to mandatory accessibility standards for new homes.
To understand what ‘works’ in the disability housing space, La Trobe University, the Summer Foundation and a range of partners have developed the Home and Living Outcome Framework.
The framework is being used as part of our 3-year, $1.64 million project, funded through an Australian Research Council linkage grant, investigating the experiences, outcomes and economic impact of people with disability moving into specialist disability accommodation (SDA).
Preliminary findings reveal insights into the experience of moving into and living in newly built SDA funded through the NDIS.
Researchers interviewed 15 NDIS participants living in single-occupant SDA apartments and collected data before and after tenants moved into their new homes. After moving into SDA:
In a recent LinkedIn article, Summer Foundation CEO Dr Di Winkler says: “Building disability housing that is based on rigorous evidence is essential for enabling people to exercise their right to live a good life.
“There is an urgent need for the co-design of new models of housing and support that deliver high quality, cost-effective support.
“These models should build on local and international evidence and best practice. Better outcomes will not only benefit people with disability, providers and investors, but also state and federal governments as they address the rising costs of the NDIS.”
The project is actively recruiting new participants and partners. Visit the webpage for more information.
The Summer Foundation welcomes the Disability Royal Commission’s focus on inclusive housing in its final report. As we continue to focus our work on people with disability with high and complex needs we welcome the 11 recommendations around housing in the report.
Our Position Statement details our recommendations and how we intend to work with governments to bring these recommendations to fruition.
In response to the final report we will continue working with and for Australians with disability, particularly those requiring 24/7 support. We remain committed to a range of initiatives that will improve the lives of people with high and complex needs.
We seek to work with governments to provide an evidence base supported by research, co-design, and projects that demonstrate innovation and potential. We will scale evidence based solutions and design alternative approaches to supported independent living.
We look forward to working with all levels of government to improve the outcomes of people with high and complex needs. For further details, you can read our full submission here.
With the release of the NDIS Review recommendations in late 2023, Reasonable & Necessary podcast host, Dr George Taleporos, has been busy looking closely at the recommendations and what they might mean for people with disability.
This year’s series kicks off with a double feature where Dr George, along with a group of sector experts, takes a ‘deep dive’ into what’s in that final report. The podcast Deep Dive into the NDIS Review – Part 1: What happened to participant choice and control? looks closely at how choice and control may be affected in light of recommendations around registered providers. Part 2 looks at assessments, navigators and psychosocial supports.
This is followed by an interview where we meet the NDIS worker and provider taskforce. This taskforce has been established to ensure the recommendations are interrogated by people with disability through a proper co-design process. You can listen here.
In the latest episode, Dr George talks to disability law experts Mitchell Skipsey and Dr Darren O’Donnovan about the changes to the NDIS Act. They explore the reasons for the changes, and how these changes may impact NDIS participants. They also share important details on how you can share your thoughts or concerns on the changes through a submission to the Senate. Don’t miss this important episode! Watch it here.
The Australian Institute of Health and Welfare has released new data about the numbers of young people living in residential aged care (RAC).
Comparing this to data we have gathered from other sources, including Senate Estimates and the NDIS Quarterly Report, we can conclude: ·
Historical data indicates a downwards trend in both the number of people entering aged care and the number of people living in aged care. In September 2022 there were 2,672 people under 65 living in RAC, compared to the latest figure of 1,891 (September 2023). In the year to September 2022, 435 people under 65 entered aged care, compared to 320 people in the year to September 2023.
The data clearly shows that there has been a significant reduction in the number of younger people entering residential aged care. However, examining the younger people leaving RAC indicates that 60% of the people are dying while still in RAC, and the majority of those going to other accommodation are going back to their family homes or hospitals.
There is still substantial work to be done. We are committed to continue working with government to improve the rates in which YPIRAC with high and complex needs are leaving RAC to go to accommodation that is appropriate for their needs with appropriate support in place.
Our Aged Care to Home service had a stall at the Aged Care Quality and Safety Commission’s national provider conference in April in Adelaide.
“The conference was a great opportunity to connect with aged care providers who have young NDIS participants in their care,” said the service’s engagement coordinator Alicia Baltra-Ulloa.
“The free service works directly with young people living in aged care, and their supporters, to achieve their housing and support goals.”
Its work aligns with the Federal Government’s target to ensure all younger people transition out of aged care by 2025 (apart from in exceptional circumstances).
Since July 2023 the Aged Care to Home service has supported 15 people to move out of aged care and many others to improve their quality of life while remaining in aged care.
The philanthropically funded service is a partnership between the Summer Foundation and the Housing Hub.
La Trobe University and the Summer Foundation are undertaking research to find out about the impact of the NDIS on the lives of young people living in aged care.
The research aims to understand how the NDIS is supporting people to achieve their goals, particularly in relation to their housing needs and preferences. It involves interviews with people living in aged care, families and those working with young people in aged care.
If you are a support coordinator working with anyone under 65 years living in aged care and interested in participating in this study, we would love to hear from you.
Email elroy.dearn@summerfoundation.org.au or register your interest by visiting summerfoundation.org.au/research-study. You can also text/phone Elroy on 0458 756 984.
Meet Katy who is sharing her lived experience as part of our Co-design team.
The Summer Foundation and the Housing Hub host a range of face-to-face and online workshops for audiences across Australia.
Source: ABC News – Jade Toomey
The Summer Foundation’s Dr Megan Topping has called for the NDIS to take people with lived experience seriously, and for the disability community to be more involved in decisions about their own care.
ABC News reported on Will Golding – who lives with a genetic condition – struggled through school, and feared he wouldn’t have coped at university, but has managed to create his dream career.
However, it didn’t come easily. The 25-year-old was paying a support worker through the NDIS for years to help him become more social. Instead, he would spend all day alone in his room, playing video games to manage the isolation.
Will said it was a result of NDIS carers who were too inexperienced, and turned over too quickly to know what to do with a young neurodiverse adult.
“So much of what makes support ‘quality’ is that human connection,” Dr Topping said.
Will now runs video gaming atrium Ignition Gamers in Canberra for young neurodiverse adults who struggle to find a community after leaving school.
