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On this episode of Reasonable & Necessary, Dr George is joined by Rebecca Falkingham, CEO of the National Disability Insurance Agency. In this exclusive interview, they talk through the changes to the NDIS Act that come into effect today and explain what these changes mean for participants.
Listen to the podcast on SoundCloud, Apple Podcasts or Spotify.
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:
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.
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.
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.
Browse our wide range of research reports and journal articles.
On this episode of Reasonable & Necessary, Dr George meets with disability law experts Mitchell Skipsey, and Dr. Darren O’Donovan to understand the changes to the NDIS Act.
They explore the reasons for the changes, and how the various changes may impact on NDIS participants. The conversation highlights the importance of involving people with disabilities in the decision-making process and ensuring that the changes lead to positive outcomes for participants.
The experts emphasise the need for stronger protections to ensure participant choice and control are upheld. The experts suggest some amendments to the Act and encourage listeners to engage in the Senate inquiry and make submissions to express their views and concerns.
Have your say on the NDIS Bill here.
Submissions are now due on 17 May.
Listen to the podcast on SoundCloud, (Apple Podcasts) or Spotify.
Discharge planning can be a lengthy process when a person has acquired disability and complex support needs. As a result, the experience of transitioning from hospital to home is often stressful.
A scoping review by La Trobe University and the Summer Foundation integrated studies on hospital discharge outcomes for people with acquired disability and complex support needs.
The study suggests that improving care continuity and coordination, initiating support and funding applications early, and involving patients and their networks in the discharge planning process could significantly improve outcomes for young adults with acquired disability and complex support needs.
A few months after the Federal Government announced it is pushing back its formal response to the Disability Royal Commission, it has now confirmed that proposed aged care reforms will also be delayed. People with disability and people in the aged care system are among the most vulnerable in our community. They have waited long enough for a more fair and just society.
The amended eligibility criteria in the new Aged Care Act is a necessary measure to close the door to younger people with disability entering residential aged care. It is disappointing that the legislation will not be implemented by 1 July 2024 as originally planned.
People using the aged care system, including younger people with disability, will continue to experience poor outcomes the longer these reforms are delayed.
On this episode of Reasonable & Necessary, Dr George meets with the NDIS Provider and Worker Registration Taskforce to understand the role of the taskforce and learn if changes to registration requirements will impact on our rights to choice and control in the NDIS.
Download transcript
To learn more check out the website below: https://www.dss.gov.au/disability-and-carers-standards-and-quality-assurance/ndis-provider-and-worker-registration-taskforce
Listen to the podcast on SoundCloud, (Apple Podcasts) or Spotify.
Witnessing how her young patients with acute brain injury were put into aged care, Dr Di Winkler AM used the power of research to fundamentally re-shape how we think about housing for people with a disability.
Establishing the Summer Foundation as a not-for-profit in 2006, Di initially wanted the organisation to provide high-quality information – for people at risk of moving into the aged care system, and for their families, who may not be aware of alternative support options.
“I wanted to help people make informed choices but also to connect people. I was really struck that many families felt like they were the only ones in that situation, that they were facing the choice to move their adult child into aged care.”
Since that time, the organisation has grown to become much more.
In Part 2 of our deep dive into the NDIS Review we explore assessments, navigators and psychosocial supports and talk about what happens next. What happens when you bring together Australia’s leading disability advocates and academics to dive deep into the recommendations by the NDIS Review? To find out check out this episode of Reasonable & Necessary for an in-depth, no holds barred examination of the most controversial NDIS Review recommendations.
You can download and listen to the audio version on SoundCloud, iTunes (Apple Podcasts) or Spotify.
What happens when you bring together Australia’s leading disability advocates and academics to dive deep into the recommendations by the NDIS Review? To find out check out this episode of Reasonable & Necessary for an in depth, no holds barred examination of the most controversial NDIS Review recommendations. In this 1st part, the panel examines mandatory provider registration and the recommendation that participants who need 24/7 support should be funded to share with 2 other NDIS participants. What does this all mean for participant choice and control?
You can download and listen to the audio version on SoundCloud, iTunes (Apple Podcasts) or Spotify.
On this episode of Reasonable & Necessary, Dr George brings together Australia’s leading disability advocates to unpack the NDIS Review. Dr George, along with El Gibbs, Nick Avery, Jarrod Sandell-Hay and Sam Paior will guide you through all the big changes that are proposed, and what they might mean for you.
You can download and listen to the audio version on SoundCloud, iTunes (Apple Podcasts) or Spotify.
On this episode of Reasonable & Necessary, Dr George speaks with disability rights lawyer Natalie Wade, about NDIS appeals, the NDIS Review and her nationally televised speech on the ABC.
You can download and listen to the audio version on SoundCloud, iTunes (Apple Podcasts) or Spotify.
The Summer Foundation’s Annual Public Forum was hosted on November 2, 2023, where we enjoyed record-breaking attendance for this years’ event. We hosted closed to 160 people in person at The Arena, NAB Docklands, and nearly 700 people online. It was wonderful to see such an appetite for having these important conversations. Our focus for the 2023 Annual Public Forum was how home and living supports can be transformed so they truly meet the needs of people with disability.
Our panel of experts was made up of sector professionals, people with lived experience and policy makers, and were hosted by Elizabeth Wright, disability affairs reporter at the ABC and Paralympian. Together, they provided a robust and thoughtful conversation around what good supports look like.
Samar Bain brought the voice of lived experience to the discussion with her unique position of NDIS participant and user of home and living supports, and as trainer of support providers. Samar emphasised that appropriate training of support workers was essential to the provision of good support.
Penelope McKay shared the work that the NDIA are doing to improve home and living supports. Kate De Cruz brought valuable insight around the evidence around what good supports look like, and David Clark, CEO at InLife, shared how they are trying to make changes that improve the support provided to participants.
Penelope McKay is the Deputy CEO at the National Disability Insurance Agency responsible for Home and Living and Market Stewardship. Penelope will join us to discuss the Agency’s perspective on how we can transform supports at home and what the NDIA is doing to improve outcomes for NDIS participants.
With the NDIS seeking to foster innovation in the sector, there’s no better time for the Head of Home and Living to discuss the new home and living policy. The discussion with Penelope will provide insight into the challenges and opportunities the new policy may present.
David Clark is CEO at InLife, a passionate not-for-profit organisation determined to break down everyday barriers and positively transform the experience of disability support. They recognise the challenges of living with disability support and want to reshape the experience for the better. David will talk about the issues and risks associated with poor quality supports and what, as a provider, can be done to make sure supports meet the needs of participants.
David has spent the last 15 years using business ideas to improve public sector and non-profit organisations.
“It might feel like you haven’t got choice and control but there are avenues you can take if you have the right supports in place.” – Samar Bain
Samar is a disability support worker trainer and shares her lived experience to support people with disability. She lives with cerebral palsy but is able to live independently since moving into her SDA apartment.
Samar’s SDA apartment provides her with the freedom she has long desired, and to live her life on her own terms. Although the NDIS has improved Samar’s life, she believes there are barriers to living with true choice and control.
Dr Kate D’Cruz is a Senior Research Fellow at the Summer Foundation. She leads research projects that evaluate the experiences and outcomes of young people with disability.
The Summer Foundation’s research into the personal impact of moving into purpose-built specialist disability accommodation (SDA) provides compelling insights into the importance of support for people with disability to live well.
The NDIS has come a long way in the 10 years since its inception, but to transform home and living supports in a way that truly meets the needs of participants, the NDIA needs to embrace flexibility, innovation and person-centred choice and control in every decision that it makes.
Watch the full recording of the forum below:
This paper summarises findings from relevant research on the topic to help inform the discussion about supports at home in the lead-up to, at, and after that forum.
On this episode of Reasonable and Necessary, Professor Bruce Bonyhady and Lisa Paul give their final interview and reveal major changes that will be recommended in the NDIS Review final report. This is a must see episode for anyone interested in the NDIS.
This episode is part of the Reasonable & Necessary podcast series.
