Communications, Author at Summer Foundation
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NDIS participants are left waiting for too long in hospital beds due to bureaucratic delays

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.

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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.

While it is early days since the election, we know we have a new Labor government  that has made promises to fix many of the troubles we have seen with the NDIS.

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Over the past few months we have been working hard on a campaign that puts a spotlight on the lengthy delays NDIS participants are facing for approval of funding for housing and supports. 

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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.

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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.

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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.

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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. 

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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.

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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.

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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. 

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Source: The Guardian – Luke Henriques-Gomes | Photo: Christopher Hopkins

A Melbourne woman with cerebral palsy is fighting to stay in her home just a year after moving in because the agency running the national disability insurance scheme has decided her funding is no longer “value for money”.

Source: The Guardian – Luke Henriques-Gomes | Photo: Christopher Hopkins

Government data shows 1,140 participants are stuck in hospital waiting for housing funding or other support before they can be released.

Source: The Age – Jewel Topsfield | Photo: Joe Armao

The state government has revealed that more than 200 Victorians with a disability were stuck in hospital for an average of 160 days after they were well enough to be discharged, and blamed the hold-up on the National Disability Insurance Scheme.

Source: ABC News – Elizabeth Wright & Alison Branley | Photo: Chris Le Page

Alicia Appleby is 38 years old but she’s been living in a geriatric ward in a Melbourne hospital for more than 260 days.

Ms Appleby has had two strokes, has a mild intellectual disability and needs constant care.

Source: Probono – Di Winkler & Peter Mulherin

Australia has over 3,400 younger people living in aged care, due to a lack of timely funding for viable alternatives. Younger people living in aged care lose skills, social connection and hope. The federal government has committed to getting them out – but its targets will be difficult to achieve. 

Source: The Conversation – Di Winkler & Jacinta Douglas

The federal government has been warning that the rising cost of the National Disability Insurance Scheme (NDIS) is unsustainable. More than a third of NDIS funding is spent on in-house support provided to 5% of NDIS participants with the highest needs.

Source: The Age – Jewel Topsfield | Photo: Jamila Toderas

Connor Brookhouse didn’t want to live in a group disability home. So he appealed to the Administrative Appeals Tribunal and won.

Source: LinkedIn – Di Winkler

We are pleased to announce the new chair of Summer Foundation, Chris Leptos AM as Chairman Elect for the Summer Foundation. Chris is an experienced Director with a wealth of international corporate roles. His experience in the housing sector combined with his work advising state and federal governments provides him with unique qualifications to take up the role of Summer Foundation Chairman. Chris has a strong interest in social impact and systems change, and shares the fundamental belief of Summer Foundation that young people in residential aged care (YPIRAC) is a solvable issue.

UpSkill Lead, Linda Hughes, recently caught up with Julie-Anne Pho – the Summer Foundation’s Policy Manager to discuss recent amendments to the NDIS Act.

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Jamie-Lee writes about her experience of waiting 12 months for SDA and the impact that had on her life.

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We are running a study to investigate the role of support coordinators and how they can effectively assist people with disability and complex needs who are enrolled in the National Disability Insurance Scheme (NDIS). This research is essential because the role of the support coordinator has changed with the implementation of the NDIS, making it challenging to find skilled and experienced support coordinators.

At present, there is still limited understanding of the demands of the role and the skills required for support coordinators, as well as the operating environment in which they work. This is a substantial problem because people with disability need assistance from support coordinators in order to get the most out of the NDIS and in turn make more progress towards their goals.

The insights derived from this research will enable the Summer Foundation to develop resources that will build the capacity of the workforce of support coordinators and assist them to be more effective in their work. This in turn will enable people with disability and complex needs to achieve positive outcomes under the NDIS.

We are inviting individuals to participate if they: 

  • are an NDIS participant with complex needs, aged 18-65 years, with disability or an acquired brain injury, who is receiving support via a support coordinator
  • have a family member who is an NDIS participant with complex needs, aged 18-65 years, with disability or an acquired brain injury, who is receiving support via a support coordinator
  • have experience in the role of a support coordinator where they supported a person with complex needs, aged 18-65 years, with disability or an acquired brain injury

The study involves one interview that will take up to 1 hour and will be conducted at a date and time that is most suitable for you.

If you think you are eligible and would like some more information about taking part in this study, please contact Lee Cubis on: 1300 626 560 or email research@summerfoundation.org.au 

We would love to hear from you. 

Source: Disability Support Guide – Anna Christian

The Federal Budget is due to be delivered tomorrow night and many people with disability could benefit from funding if advocates’ demands are met.

Meet Karen, who is sharing a poem she has written about her experience living with Cerebal Palsy.

My name is Karen and I have cerebral palsy and a few other disabilities. I love to read and write, and binge watch tv.

I have cerebral palsy,
But it doesn’t have me,
I use a wheelchair to get around,
It helps set me free.


I have cerebral palsy,
As a child I thought it had me,
I had to fit in a box to belong,
Cerebral palsy made everything feel wrong.


Took a long time for me to realise that I didn’t have to fit in,
Be another cookie in a box,
Instead of standing out in a crowd,
I thought cerebral palsy wasn’t allowed.


Now it’s something that I am proud of,
A badge of honour,
With battle scars,
Gives me a unique story to tell.


Through my life I have been through hell,
Wondering if I could face another day,
Just like the one before,
Didn’t know if I could take another hit.


Fall down,
Get back up again,
Put myself back together,
Time and time again.


There are cracks in my walls,
That I used to put up every single day,
To hold the demons cerebral palsy creates,
Away from myself.


I now understand we all have demons,
We have to keep at bay,
Put ourselves back together,
Different in many ways.


I tell my story now with pride,
About who I am and where I have been,
Know where I want to go,
Cerebral palsy is just a small part of who I am.

The 25th of March is National Cerebral Palsy awareness day. I would like people to know that cerebral palsy affects each person differently. No two people who have it are the same. One day I want to be a counsellor to help others with disabilities deal with their own battle scars and understand that it is okay to be different and whoever they want to be.  It might be a long road to get there but one thing I know for sure is that I am no longer afraid to be me. Cerebral palsy and all, nothing is going to stop me.


National Cerebral Palsy Awareness Month – March 2022

If you would like to share your lived experience please contact us:

Emaillivedexperience@summerfoundation.org.au
Phone – 0499 333 105

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Critical to successfully resolving the issue of Young People in Residential Aged Care is streamlining NDIS processes for funding housing and support until they become as responsive as the aged care system. 

In the lead-up to the federal election, the Summer Foundation is working with an alliance of people with disability, advocacy organisations and the housing, health and disability sectors to campaign for timely NDIS funding for housing and support. 

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Last week a new campaign was launched to get Australians with disability the housing support
they need.

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Off the back of our successful Building Better Homes campaign in 2021, this year will see many new homes around the country built to minimum accessibility standards. This means new homes will include features such as increased door widths and a no-step entrance, making a significant difference to the millions of Australians with mobility issues. 

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In October 2021, the Housing Brokerage Service (HBS) started working with the Victorian Department of Health and Melbourne health services to support people with disability to discharge from hospital into housing that meets their needs and preferences.

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The Federal Government is looking to introduce amendments to the National Disability Insurance Scheme (NDIS) Act 2013. The Summer Foundation has produced explainers for participants and the sector based on information in the draft legislation.

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What would you like to share with readers about yourself? 

I’m Samar, I’m 33, I have cerebral palsy and live in a new SDA apartment. I work training support workers at courses and my other job is a personal assistant. I also do projects with the Summer Foundation.

I enjoy getting out and about – I like going to the beach, restaurants and out for coffee. I used to stay at home but now I’m very outgoing and love to live life.

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When you have disability it can be hard to find a home that is right for you. And if you have lived somewhere that isn’t right – like a nursing home – for a long time it can be really hard to imagine moving somewhere else. 

With generous funding support from the TAC and State Trustees, people who have experience of moving out of unsuitable housing created some great resources for those who are just starting their journeys. The resources are designed to help people navigate the challenges and feelings that come with such a big transition. They include a podcast, videos and information about getting the right support.

You can access the “Moving out of a nursing home” resources here.

You can also listen to the ABC story that talks about the resources here.

Source: The Canberra Times –  Dan Jervis-Bardy

The pre-election federal budget should include an extra $50 million to help get NDIS participants out of hospital and into suitable housing, according to a leading advocacy group.

The Summer Foundation has made the request as disability-supported homes sit vacant across Australia, including in Canberra, while hospital-bound participants are unable to move into them amid delays processing paperwork and approving funding.

Source: Aged Care News – Bianca Roberts

On the surface, there has been progress.  

According to a new report from the Australian Institute of Health and Welfare (AIHW) titled Younger people in residential aged care, the number of Australians aged under 65 living in residential aged care facilities (RACFs) fell by 20 per cent from almost 4600 in September 2020 to around 3700 in September 2021.

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Source: Disability Support Guide – Anna Christian

A newly released report shows the Government is still short of its target to have no one younger than 45 living in nursing homes, and no one younger than 65 entering aged care homes, by 2022.

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The Summer Foundation’s Information Service and Lived Experience Advisor, Emma Gee, chats with one of the organisation’s Lived Experience Facilitators, Shanais Nielsen, about the best ways to plan, navigate, stay positive and up-to-date in this COVID world. 

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Helen has been a long-time contributor to the work of the Summer Foundation. She shares her lived experience of disability in an effort to create change. Helen worked with a team to create resources for people who are thinking of moving out of aged care. 

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Source: ABC News | Author: Nas Campanella

Almost 4,000 young Australians with disability live in aged care too, and advocates say a broken system is preventing any progress on finding them somewhere else to live.

They’re hoping new tools to support people to make the transition will help to avoid a life of isolation.

Listen online

As 2021 comes to a close, we want to thank you for your ongoing work to support people with disability to achieve good outcomes and to live well in the community. We are very proud to support the development of the sector and to work alongside people with disability as allies.

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Quite a few years ago we created a hospital passport with my son. A hospital passport is a really handy document to have if you need to go to hospital, particularly if you have disability and might have difficulty communicating with hospital staff.

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It really has been such a pleasure speaking with George Taleporos in his Reasonable and Necessary podcast, discussing such a relevant and important issue. COVID-19 will probably affect us all, or at least someone close to us. 

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Welcome to our last edition for 2021. We celebrate the significant amount of critical work that has been done toward ending the need for younger people with disability to live in aged care; in what have been challenging circumstances over this past year. As we open up and resume face-to-face engagement, we look forward to also carrying over the benefits and efficiencies we’ve honed over the past almost 2 years of working with COVID-19 disruptions.

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The Summer Foundation’s Board renewal process continued with new appointments and planned resignations in November.

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The successes, challenges and new opportunities from the 2020/21 financial year are highlighted in our latest Annual Report.

It shows the progress of the Summer Foundation against our key areas of focus including:

  • Building the capacity of key service providers, including support coordinators, hospital staff, allied health professionals, SDA and support providers, and many others 
  • Developing an evidence base for potential solutions that will ensure young people with disability have choice and control over their housing and support
  • Building the capacity of people with disability around housing and support options and housing pathways

You can access the 2020/21 Annual Report here.

On-site shared support (OSS) provides a significant opportunity for people with disability living in Specialist Disability Accommodation (SDA) apartments to increase control over their housing and support options and to lower the cost of their support.

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Our UpSkill team has developed a new guide to delivering support coordination to people with complex needs.

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The Summer Foundation was the proud promoter behind the Million Dollar Vax competition that received over 2.7 million entries in October. The aim was to increase the rate of vaccination nationally to reduce the burden on our healthcare systems and reduce the risk of infection to the most vulnerable in our community including people with disability. The campaign targeted regions with low vaccination rates.

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Andrew, who is 49 years old, has been living in aged care in Tasmania for 4 years. 

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The Summer Foundation’s Housing Hub team will soon pilot a support coordination service that will specialise in developing housing evidence for Specialist Disability Accommodation (SDA) eligibility. 

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