Mainstream NDIS providers failed Will, so he built his own support service for neurodiverse people to game together

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.

View the article

Welcome to the April edition of Summer Foundation Focus.

This edition of SF Focus comes as our work is ramping up across the many areas we are involved in. It includes information about the latest work of our Research and Government Relations teams, and the renewed push of the Building Better Homes campaign.

The most recent statistics about the number of young people in aged care show as of 30 September 2023 there were 1,891 young people living in aged care; 1,565 were NDIS participants.

While our work has always focused on making sure this number continues to drop, we are also acutely aware of the ongoing need to ensure people with disability have access to the 24/7 support they need to live well in the community.

The voice of lived experience has a pivotal role in this sphere and the Summer Foundation is engaging with a growing number of people with disability who have a crucial contribution to make. People like Katy, who is passionate about her work as part of our Co-design team. See her story here.

I hope you enjoy reading about our ongoing work.

Di Winkler, CEO & Founder

Subscribe to our Summer Foundation Focus updates

View all articles in this issue

Call for coordinated work by governments

Federal, state and territory disability ministers have acknowledged that all governments need to work together in a coordinated way to ensure people with disability have access to culturally appropriate, safe and quality services and supports regardless of where they are living in Australia.

New research published

The research team has had several papers published in peer-reviewed journals this year. 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.

Help make all new homes accessible

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.

The way ahead for disability housing

The Federal Government has a unique opportunity to reset decades of flawed policies and practices around disability housing. Summer Foundation CEO Dr Di Winkler wrote in a recent LinkedIn article that to avoid repeating the mistakes of the past, new disability housing must be built with tenant outcomes in mind.

Action needed on disability housing in rural and remote areas

The Summer Foundation made a submission to the Joint Standing Committee on the NDIS focusing on innovation in disability housing, tenant centred support and better outcomes for NDIS participants in rural, regional and remote Australia.

Reasonable & Necessary – your go-to for all things NDIS

With the release of the NDIS Review recommendations in late 2023, Dr George has been busy looking closely at them and what they might mean for people with disability.

Young people in residential aged care – new data released

The Australian Institute of Health and Welfare has released new data about the numbers of young people living in residential aged care (RAC).

Connecting with aged care providers

Our Aged Care to Home service will have a stall at the Aged Care Quality and Safety Commission’s national provider conference this month (April) in Adelaide.

Support coordinators input needed for research

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.

Events roundup: April – June

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

The Summer Foundation supports this position.

However, in their joint media statement the ministers also confirmed they would not publish their formal responses to the Disability Royal Commission (DRC) final report by 31 March 2024, as recommended by the DRC.

We cannot afford to wait any longer. More than 10,000 people shared their stories with the commission via public hearings, submissions or private sessions. Expectations are high for a comprehensive response and clear solutions from governments.

It is critical that the people with disability who gave so much to the DRC benefit from some quick wins as well as see substantial actions to address the more complex and systemic challenges.

Read the Summer Foundation’s position statement on the DRC Final Report here.

The research team has had several papers published in peer-reviewed journals this year.

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 Building Better Homes campaign needs your help to encourage the NSW and WA governments to sign up to mandatory accessibility standards for new homes.

They are the only states that have not yet committed to adopting the 7 liveability and accessibility standards for new homes as mandated in the revised National Construction Code (NCC).

The key design features in the code include level access entryways, 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 Disability Royal Commission and the recent NDIS Review recommended the NSW and WA governments sign up immediately to the standards (see LinkedIn post).

“Creating homes with greater accessibility and amenity is a goal that is within reach,” said Mary Sayers, Building Better Homes campaign director. “It’s time for people with mobility limitations in NSW and WA to have the same rights as they do elsewhere.

“Housing is a fundamental human need, and greatly influences people’s quality of life.

“Without fit-for-purpose accessible housing, many Australians are unable to live in a home that is appropriate to their needs across their lifespan.”

You can help us show the NSW and WA Governments that adoption of the Liveable Housing Design Standard as mandated in the NCC is critical for every Australian.

Sign the NSW petition

The Federal Government has a unique opportunity to reset decades of flawed policies and practices around disability housing.

Summer Foundation CEO Dr Di Winkler wrote in a recent LinkedIn article that to avoid repeating the mistakes of the past, new disability housing must be built with tenant outcomes in mind.

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

“Building disability housing that is based on rigorous evidence is essential for enabling people to exercise their right to live a good life,” Dr Winkler said.

“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. For more information visit the Home and Living Outcome Framework webpage.

We are calling on the NDIA and the federal, state and territory governments to build on existing research and co-design work, to scale evidence-based solutions and design alternative approaches to Supported Independent Living (SIL).

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.

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 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; 54 of these were NDIS participants.
48 NDIS participants aged under 65 entered RAC from hospital; the 6 others entered RAC from aged care respite, homelessness, own/family home, SDA or supported accommodation.

Our Aged Care to Home service will have a stall at the Aged Care Quality and Safety Commission’s national provider conference this month (April) in Adelaide.

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

Meet Katy who is sharing her lived experience as part of our Co-design team.

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.

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”.

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.

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.

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.

Subscribe now

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.

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.

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.

Welcome to our first newsletter for 2024.

We go into the new year with renewed enthusiasm and determination to see more positive housing outcomes for young people with disability and those who support them.

It’s not always easy to find the information you need about housing options.

The Housing Hub wants to make it easier to find reliable and trustworthy information to help you navigate your housing journey.

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

Julia recently joined the Co-design team at the Summer Foundation. She shares her story and tells us about her work.