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Summer Foundation Focus – September 2024

Welcome to our September newsletter.

It’s a busy and exciting time for the Summer Foundation as we refocus our work on designing better housing and living solutions for Australians with disability who need access to 24/7 support.  

The Summer Foundation wants to set a new standard in housing and living supports that lifts expectations of what a good life and future look like for the more than 40,000 people with disability with high support needs. Young people in residential aged care will always be important to us, and are part of this group of people. 

You can read more about this here and we are looking forward to sharing more details about our new focus at the Summer Foundation Annual Public Forum on 17 October. 

The panel of housing and living experts for the Forum has been locked in. They will delve into the topic Fulfilling the NDIS promise in housing and living: Innovation starts today (read more here). We have almost 800 people registered to attend the Forum so far. It’s not too late to book your ticket for the hybrid online and in-person event here.

It is also a significant time of change for the National Disability Insurance Scheme (NDIS) with the retirement of the Minister for the NDIS, Bill Shorten, and the passing of the NDIS Amendment (Getting the NDIS Back on Track) Bill 2024. 

We pay tribute to Minister Shorten’s work in the creation of the NDIS and his dedication to improving the lives of people with disability. 

Read details about the legislative changes here and listen to Dr George’s Reasonable & Necessary podcasts discussing the issue.

I hope to see you at the Annual Public Forum at this pivotal time for our organisation and the disability sector.

Di Winkler CEO and Founder

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NDIS Amendment Bill is now law

The NDIS Amendment (Getting the NDIS Back on Track) Bill 2024 was passed by Parliament on 22 August 2024. The Bill has received Royal Assent and will come into effect on 3 October 2024.
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Rallying for accessible housing

More than 40 people with disability and supporters rallied outside the NSW Parliament on 6 August calling on state leaders to end housing discrimination in NSW.
Read More

The Summer Foundation will design better housing and living solutions for Australians with disability who need access to 24/7 support, here’s why. 

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We are delighted to announce that Jamila Rizvi will host a panel of housing and living experts at our Annual Public Forum on 17 October.

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The Grattan Institute has called for significant changes in NDIS housing and support to improve outcomes for people with disability who need access to 24/7 support.  

Read More

The NDIS Amendment (Getting the NDIS Back on Track) Bill 2024 was passed by Parliament on 22 August 2024. The Bill has received Royal Assent and will come into effect on 3 October 2024.

Read More

More than 40 people with disability and supporters rallied outside the NSW Parliament on 6 August calling on state leaders to end housing discrimination in NSW.

Read More

The Housing Hub separated from the Summer Foundation on 1 July 2024 and is now its own entity with its own board. 

Read More

Dr George has maintained the focus on the NDIS in a series of in-depth conversations with sector experts on recent Summer Foundation Reasonable & Necessary episodes. 

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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.

Read More

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.

Read More

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.

Read More

The Building Better Homes Campaign is calling for an end to housing discrimination against people with disability and older Australians in NSW.

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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

Subscribe to our Summer Foundation Focus updates

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.
Read More

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.
Read More

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.
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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!

Sign up here

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.

Watch here

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

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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.

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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.

Subscribe to our Summer Foundation Focus updates

View all articles in this issue

Meet Katy

Meet Katy who is sharing her lived experience as part of our Co-design team.
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The research team has had several papers published in peer-reviewed journals this year. 

Quality disability support

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. 

Discharge planning

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.  

Realising rights in supported accommodation

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.

Sign the NSW petition
Sign the WA petition