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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.
Jamie-Lee writes about her experience of waiting 12 months for SDA and the impact that had on her life.
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.
If you would like to share your lived experience please contact us:
Email – livedexperience@summerfoundation.org.au
Phone – 0499 333 105
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.
Last week a new campaign was launched to get Australians with disability the housing support
they need.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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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.
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.
The Summer Foundation’s Board renewal process continued with new appointments and planned resignations in November.
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:
