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Events roundup: July – August

The Summer Foundation and the Housing Hub host a range of face-to-face and online workshops for audiences across Australia.

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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.

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.

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:

  • Overall health improved for 60% of tenants 
  • Wellbeing ratings improved for 66% of tenants 
  • Community integration scores improved for 73% of tenants 
  • Average daily support hours fell by 2.4 hours 
  • Only 66% of tenants required overnight support, dropping from 87% pre-move 

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: ·      

  • As of 30 September 2023, there were 1,891 young people living in RAC; 1,565 were NDIS participants
  • From 1 October 2022 to 30 September 2023, 320 younger people entered RAC
  • From October 2022 to 30 September 2023, 589 people under 65 left aged care

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.

For more information visit the Aged Care to Home webpage.

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.

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The Summer Foundation and the Housing Hub host a range of face-to-face and online workshops for audiences across Australia.

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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.

As part of our ongoing commitment to improving the lives of people with disability the Summer Foundation, in partnership with the Housing Hub, has launched the Feedback in Supported Accommodation Resource (FISAR) project.

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The Summer Foundation has welcomed proposed changes to the Aged Care Act that specify “apart from First Nations persons, or people at risk of homelessness, no other younger persons will be able to access funded aged care services”.

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After more than 4 years living in aged care William was finally able to move into a specialist disability accommodation apartment with the help of the Aged Care to Home service. The move came 4 days before his 52nd birthday.

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The Summer Foundation welcomes the NDIS Review’s emphasis on innovation in housing and living. Ensuring housing and living supports are fit-for-purpose not only meets the needs of NDIS participants, it is also critical to overall scheme sustainability.

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The Summer Foundation’s Dr George Taleporos is gearing up for another great year of Reasonable & Necessary podcasts

The podcast aims to demystify the NDIS and features interviews with politicians, sector professionals, people with lived experience and other experts. Not one to shy away from the hard questions, Dr George’s engaging style always makes for great listening. See some podcast highlights here or subscribe so you don’t miss an episode.

The Summer Foundation Research team recently had its work on the impact and experiences of moving into specialist disability accommodation (SDA) for people with acquired complex disability published in the peer-reviewed journal Brain Impairment.

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Hi, I’m Bruce, 52 years young, living in an SDA apartment on the Gold Coast. I have a disability called arthrogryposis, which affects both joints and muscles of my major joints.

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The Hospital to Home program will now be delivered by the Housing Hub. Since its establishment in 2017, the Housing Hub has expanded to offer a range of specialist support services for people with disability.  It is well placed to continue delivering this exceptional service. 

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