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.

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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.

Read the research summary here

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.

Channel 9 broke the news here.

Read Minister Wells’ media statement.

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.
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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

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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.

Read the full article and watch the video here.

Source: latrobe.edu.au

La Trobe University has announced its 2024 Distinguished Alumni Award recipients, which includes the Summer Foundation’s CEO and founder Dr Di Winkler AM, who was recognised for her work in reframing how we consider housing for people with a disability.

Di established the Summer Foundation in 2006 after becoming frustrated by the lack of appropriate housing and support for young people with disability. She completed her PhD in 2012 on the topic of Younger People Living in Nursing Homes.

The Distinguished Alumni Awards are one of the highest honours bestowed by La Trobe University and are selected annually from a community of more than 260,000 graduates.

The 7 recipients were awarded in a ceremony hosted by the Chancellor, the Hon. John Brumby AO, and Vice-Chancellor, Professor Theo Farrell.

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Source: ABC News – Evan Young and Nas Campanella

It’s been 3 months since the NDIS Review called for a total rethink of disability support in Australia.

ABC News have today reported on the draft legislation unveiled by federal government. The draft legislation addresses priority recommendations from the NDIS Review and represents the first of the policy and system amendments to improve NDIS participant experience, with a focus on access, plans and budget settings, and quality and safety.

Government has stressed reforms won’t happen right away or without more consultation. The ABC suggests the consultation period will last 18 months and any changes that result would be gradually rolled out over 5 years, as recommended by the NDIS Review.

Many improvements cannot take effect until further NDIS rules and legislative instruments are updated or made. It is critical that the Government partners with the disability community to design solutions that deliver good outcomes for people with disability and the scheme.

To quote from the NDIS Review final report, “Continuing the engagement is the only way to ensure the success of these reforms and to continue to rebuild trust.”

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A new study by the Summer Foundation and La Trobe University brings the perspectives of people with acquired neurological disability, disability support workers, and close others of people with complex needs together to construct a holistic model of quality support grounded in lived experience.

It aimed to develop an understanding of the factors that influence the quality of paid disability support for adults with acquired neurological disability. People with acquired neurological disability experience a range of physical, cognitive, and communication impairments, and often require paid support provided by a disability support worker.

People with disability have the right to receive quality disability support to help them to live the life they want to live, and this ground-breaking study illuminates how we will get closer to this.

Read more here

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.

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According to the NDIS quarterly report released this morning, there were 1,433 NDIS participants under 65 living in residential aged care (RAC), as at 31 December 2023.

Solving the issue of young people in residential aged care (YPIRAC) requires targeted efforts to close the door to younger people entering aged care and supporting those currently in aged care to safely leave.

We welcome the proposed eligibility criteria for entry into the aged care system as outlined in the exposure draft for the Bill for the new Aged Care Act. This is a necessary measure in closing the door to younger people entering aged care.

However, more needs to be done to ensure younger people do not unnecessarily enter or get stuck in RAC.

Increased investment into other service sectors is also required to meet the needs of younger people. Younger people in, and at risk of RAC, must have access to a range of safe housing and living alternatives so they can exercise true choice and control over where they live.

Read the Summer Foundation’s submission on the exposure draft of the Bill for the new Aged Care Act.

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.

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The Hospital to Home service – previously offered by the Summer Foundation – will now be available through the Housing Hub.

Since 2020, the Hospital to Home service has supported over 300 people stuck in hospital to discharge and achieve their home and living preferences.

The service, which adopts a rights-based approach, is designed to:

Search for housing options for NDIS participants in hospital to support discharge
Prevent young people with disability being discharged to aged care
Assist health teams and supporters to understand the types of housing available, and the eligibility and evidence requirements

This service is philanthropically and government-funded, and is completely free to use.

To be eligible for the Hospital to Home service, a person must:

Be an inpatient in an acute or sub-acute hospital setting
Be an NDIS participant, or likely to be (ARF submitted)
Require support to find housing options in order to be discharged from hospital

Find out more here

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.

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

As part of our ongoing commitment to improving the lives of people with disability and their families, we are launching the Feedback in Supported Accommodation Resource (FISAR) project.

The Summer Foundation, in partnership with the Housing Hub, will collaborate with people with disability and their supporters to create new resources to help them share feedback, make complaints and shape the services they access.

We first met Lisa 2 years ago when she was living in aged care. Louise, from the Summer Foundation, chatted with Lisa about how she is going with living in her own home.

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.

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Welcome to our last newsletter for 2023.

The year ends on a high with the state and federal governments agreeing at National Cabinet to work together to improve the lives of people with disability, and the release of the NDIS Review final report and recommendations.

It is heartening to see the government has laid the foundations for the radical changes to the NDIS that are needed. See our perspective on the recommendations and what will happen next here.

Taken together, the NDIS Review and the Disability Royal Commission recommendations have the potential to transform disability housing. You can read more about this in my recent article in The Conversation here.

It’s International Day of People with Disability, long time contributor to the work of Summer Foundation, Lynne Foreman shares her ideas and thoughts on the day.

Introduce yourself

Hi, I am Lynne. I am a disability advocate in Geelong. My disability is called arthrogryposis multiplexcongenita, and I love saying it because no-one’s ever heard of it. There are only a few of us with it in Australia!

I am in a lot of disability organisations where I help out with things. For example, the Valid conference is coming up in February, I am on the reference group, and I help guide people on the day. Part of my role in this is empowering other people with disabilities.

What does International Day of Disability mean to you?

We all come together, we are all one.

Why is International Day of People with Disability important to acknowledge?

I have always been proud that I have a disability.

We recognise everyone these days, why not recognise us!

From this recognition, I hope people understand us a bit better. I was brought up with 6 siblings, I wasn’t treated differently. I think I got out of doing the dishes once!

We might have a disability, but we can do most things. People have got to open their minds. And say just because you’ve got a disability, we can do a lot of things we just do some differently, at the end of the day, we will do it. Sometimes we get looked at and not spoken to. People can be too scared to speak with us because they may think we don’t speak, they don’t want to get embarrassed, so they speak to our support worker instead. I speak up and say you can speak to me.

The theme of IDPwD this year is ‘United in action to rescue and achieve the Sustainable Development Goals (SDGs) for, with and by persons with disabilities.’ What does this theme mean to me?

My first thought was, technology is fantastic, there is no reason why we shouldn’t do anything. There is more scope for more assistance.

There are still barriers within the able community because they don’t understand. Assumptions are made.

How can we be united?

It has improved a hell of a lot, I am 67 years old, it has improved. But some people don’t want to know – it is too hard for them. It is education really. We need to think outside the box.

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.

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Hear from Samar Bain, NDIS participant and support worker trainer, who featured on the panel at the Summer Foundation Annual Public Forum.

Can you tell us why you were asked to be a panelist and your connection to the topic ‘Transforming Home and Living Supports’?

The Summer Foundation approached me as I have done other work for them. Given my background as a disability support work trainer and NDIS consultant they thought I was a perfect person to be on the panel as an NDIS participant and working in the field.

I live in SDA housing. The topic transforming home and living support really grabbed me as I’m always having to fight to maintain my support worker hours and the way I would like to be supported in my home.

What do you think the most important part of the discussion was?

What makes a great support worker?
How far has the NDIS come in the last 10 years and how can we improve?
If you had freedom to spend your funding how would you spend it?

These 3 questions were a highlight for me. They all relate to something that I am really passionate about.

I think when it comes to being a great support worker you just have to keep in mind that we are humans supporting humans. I think people forget that.

How did you feel speaking on the panel?

I felt really nervous. All the prep work leading up to it was very exciting and when we got closer to the time I was starting to get nervous and I was worried I would get stage fright but when I got up the first question it just felt natural. I was happy when everyone added to the discussion.

I think when I got the question from the audience it kind of threw me off guard but I surprised myself.

Why do you take the time to share your experience and insights?

I am very passionate about what I do. As someone living with a disability I feel like I’ve got a valid point of view and I also work in the field. I love to share my insight. I am very passionate about the disability sector and training support workers. I like to share my insight and my experiences and I want people to learn from that, to take away from that and be the best version they could possibly be, just like I have done.

What would you say to someone else thinking about connecting with our work at the Summer Foundation and sharing their experience?

It’s a great organisation to work with and be connected with. The knowledge and the insight they have is just incredible. I highly recommend connecting as they are very supportive and value everything you share with them. I feel very honoured to be part of their team as they are just amazing to work alongside.

You can watch a recording of the 2023 Annual Public Forum here.

Transforming supports at home: Making it work for NDIS participants

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.

Find out more about our panel below:

Penelope McKay – Deputy CEO, Market Stewardship and Home and Living – NDIA

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 Clarke – CEO, InLife Independent Living

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.

Samar Bain – NDIS participant and Disability support worker trainer

“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 – Senior Research Fellow, Summer Foundation

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:

Download the Q&A resource

Download the transcript

Discussion paper

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.

Download the discussion paper

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.

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On the latest episode of Reasonable & Necessary, Dr George speaks to Alastair McEwin, former Commissioner, Disability Royal Commission about what the findings and recommendations of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability will mean for the disability community.

“I have had my head in the report ever since it was released and was more than keen to speak to the man who had spent the past 4.5 years devoted to this important piece of work,” Dr George said.

“We discuss a new disability rights act, changes to the disability discrimination act, segregation in education, the phasing out of group homes and much more.“

This episode is part of the Reasonable & Necessary podcast series.

You can download and listen to the audio version on SoundCloud, iTunes (Apple Podcasts) or Spotify.

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