A New Taskforce to stop NDIS Providers Overcharging

Dr George Taleporos, Independent Chair of Every Australian Counts welcomes the government’s announcement to crack down on NDIS Providers overcharging participants through their newly announced taskforce. This initiative, introduced by NDIS Minister Bill Shorten, promises to clamp down on unfair practices that have been taking advantage of the system and its participants.

Dr George Taleporos emphasised the importance of co-designing its implementation with NDIS participants. “Involving participants in shaping the taskforce’s approach is crucial to ensuring it effectively addresses the challenges they face. A collaborative effort would increase the taskforce’s ability to do its work”

This taskforce is in response to the widespread concern of our community over the “NDIS Tax”, where prices for supports and services are significantly inflated specifically for NDIS Participants. The Australian Competition and Consumer Commission (ACCC) will lead this taskforce, investigating and taking action against providers who uses these unfair pricing strategies.

New laws and regulations aim to strengthen the rules against overcharging, and make sure that people who break these rules face larger penalties.This taskforce tells providers that charging higher prices to NDIS participants will be against the law. 

NDIS Participants, their carers, guardians or nominees will be able to report suspected price gouging to the taskforce by emailing , or by calling 1800 035 544.

For more information, and to read about the announcement, click here.

Every Australian Counts: Upcoming Forum and Invitation to Influence our Next Steps

In the spirit of collective action and shared vision, Every Australian Counts is extending an invitation to an important online forum scheduled for the 8th of April at 12:00 PM AEST. This meeting marks a significant step in our ongoing journey to advocate for and defend the the National Disability Insurance Scheme (NDIS), informed directly by your feedback and the insights gathered through our recent survey.

 

A Glimpse into the Survey and Its Significance

 

Our recent survey aimed to capture the voices of the NDIS community—individuals with disabilities, their families, carers, and friends—regarding the proposed changes in the NDIS Review. The feedback focused on critical areas such as housing and living supports, the implementation of mandatory provider registration, the introduction of two types of Foundational Supports, Navigators, and significant amendments to eligibility and access, early intervention, planning, and psychosocial disability supports.

 

Why Your Participation Matters

 

The upcoming Zoom meeting is not just an opportunity to be updated on the survey results but a forum to actively participate in shaping the future directions of our advocacy efforts. It is your chance to:

 

Hear firsthand about the community’s feedback on crucial aspects of the NDIS.

Engage in discussions that help set the priorities for our advocacy, ensuring it aligns with the community’s needs and aspirations.

Collaboratively influence the next steps for Every Australian Counts, focusing on developing a campaign that addresses the most pressing issues identified through the survey.

 

Meeting Agenda

 

The meeting will feature an overview of the survey results, covering key areas such as housing supports, mandatory provider registration, foundational supports, navigators, eligibility changes, early intervention, planning, and psychosocial disability supports. Following the presentation, there will be an open forum for discussion on the survey results, enabling you to contribute to the decision-making process on the future directions of Every Australian Counts.

 Together, we can ensure that the future of the NDIS is shaped by those it seeks to support. Join us to make a difference.

 

Registration is essential. 

 

You can register, and get more information here

 

Don’t forget to follow us on facebook, instagram and twitter to stay up to date with all news and events.

 

You can also sign up to receive our emails here.

Response to NDIS Review – Choice and control are under threat – the government must recommit to codesign

Statement by Dr George Taleporos, Independent Chair of Every Australian Counts

UPDATE: Bill Shorten has promised to work with us to make sure that in the recommendations that are adopted by the government are codesigned and meet the needs of our community

It’s been an extremely stressful time for our community waiting for these recommendations, our lives depend on the NDIS.

While we have had some glimpses of some of the findings, today is our first opportunity to examine the recommendations of the NDIS Review.

We are glad that the Minister has released the report today so our community can finally have our say on what this report is proposing.

We will need to take time to thoroughly examine these recommendations and work with our community to understand the report and listen to what they have to say about what is being proposed.

At first glance…

We are very concerned to see the recommendations that might force more people than ever into unsafe group homes and subject us to abuse and neglect. This will only further embed segregation and is in breach of Australia’s responsibilities under the UN Convention on the Rights of People with Disability. 

We are dismayed with the proposed changes to force us to use registered providers. This will impact on our rights to decide who comes into our homes and who provides our support. This is an attack on our right to self manage our supports and on the fundamental principles of choice and control.  The principles of choice and control are fundamental to the NDIS that we fought for and they must be maintained. The right to self-management and self-determination must be protected.

There is a serious risk that forcing us to use registered providers will make it impossible to get the essential support that we need. People in regional and remote Australia, many of whom have little or no access to registered providers, are at greatest risk.

We fought for an NDIS where we are in control of our lives, where we make the decisions that affect us. Where we decide where we live and who we live with. Where we decide how we are supported and who provides our support.

We fought for an NDIS that promised access to the support that we need to be in control of our own lives and to be included in our Australian community. This promise must not be broken.

The NDIS is a vital lifeline for thousands of people with disabilities and our families across the country. It is insurance for all Australians who could be born with or acquire a disability. Disability can happen to any of us within an instant. We want to know that support will be there, if and when we need it.

The review has concluded that for the NDIS to be sustainable, we need an inclusive Australian society. So we need all states and territories and all levels of governments to do what it takes to make mainstream services accessible and inclusive of people with disability.  Without that, the NDIS becomes the only lifeboat in the ocean and will be in danger of sinking under the pressure.

While the media has focused on the cost of the NDIS, we need to remember that the NDIS has many economic and social benefits. Every dollar spent on the NDIS returns more than double that to the economy. Early intervention and investment in our lives pays dividends and must be maintained. While we welcome the commitment by National Cabinet to Foundational Supports, many people in our community will be worried that their supports will be taken away. We don’t want to see children or anyone who needs disability support falling through the cracks.

Our community needs NDIS decisions to be faster and fairer and we need planners who understand us and listen to us. The assessments proposed by the NDIS Review, will make many people in our community nervous. Assessments of any sort will only work if they are codesigned with people with disabilities.

For the NDIS to work, people with disability need to be at the centre of decision making. All changes to the NDIS that come out of the NDIS Review need to be codesigned. We look forward to working with the government to ensure that all changes are codesigned and  meet the needs of our community. Nothing about us without us!

 

This Week is Going to Be Huge

While it has not been formally announced, we expect that the NDIS Review recommendations will be released after this meeting.

On Thursday Minister Bill Shorten will be giving an important speech on the NDIS Review at the National Press Club. You can watch it live on the ABC at 12:30 PM.

The Minister has agreed to meet with me for an interview to answer our questions after the NDIS Review report is released.  So please email us with your questions.

Our message to decision makers is clear

We will not judge the report until we have seen it in full. But what we must do is remind our decision-makers about what our community desperately needs to see come out of this review. Our message to the National Cabinet is clear and we ask all of our community to email your State and Territory Disability Reform Ministers with this message:

The NDIS is a vital lifeline for thousands of people with disabilities and our families across the country. We fought for an NDIS that promised people with disability would get the support that we need to be in control of our own lives and be included in our Australian community.

The NDIS has many economic and social benefits. Every dollar spent on the NDIS returns more than double that to the economy.

The NDIS Review is an important opportunity to make the NDIS simpler, fairer and more effective at meeting the needs of our community.

We need faster and fairer decision-making and planners who understand us and listen to us.

We need an NDIS where we are in control of our lives, where we make the decisions that affect us. Where we decide where we live and who we live with. Where we decide how we are supported and who provides that support. 

For the NDIS to work, people with disability need to be at the centre of decision making. All changes to the NDIS that come out of the Review need to be codesigned. Nothing about us without us!

For the NDIS to be sustainable, we need an inclusive Australian society. Without that, the NDIS becomes the only lifeboat in the ocean and will be in danger of sinking under the pressure.

We need all states and territories and all levels of governments to do what it takes to make mainstream services accessible and inclusive of people with disability.

We don’t want buck passing or people falling through the cracks.

We want cooperation and commitment to make the NDIS work, not just for us, but for future generations.

At the upcoming National Cabinet meeting please hold true to the promise of the NDIS and commit to making Australia an inclusive society, where Australians with disabilities have the support that we need to live the lives that we choose.

We want to hear from you!

Don’t forget that we want to hear from you about what you think of the NDIS Review when the recommendations come down. So remember to email us with any concerns or questions you want us to raise with the Minister. There will also be other ways to have your say, including a community forum, stay tuned for all the details.

In the meantime, we will be working hard to bring you all at the latest news on the NDIS Review as soon as it happens.  We will be bringing you an in-depth analysis of all the recommendations in a special one-hour podcast with our partners the Summer Foundation, Disability Advocacy Network Australia, People with Disability Australia and the Grattan Institute. It will be a ripper!

Make sure you are subscribed to our newsletter and tell your friends to join up as well to get the latest news. You can subscribe at the bottom of this page.

Thank you for your time and your commitment to making the NDIS work.

Kind regards,

Dr George Taleporos
Independent Chair, Every Australian Counts

PS: in case you missed our interview with Bruce and Lisa about the NDIS Review, you can check it out below:

Big Changes Revealed by the NDIS Review – But any Changes Must Be Codesigned

Dr George Taleporos
Independent Chair of Every Australian Counts

It is a really stressful time for people with disabilities and our families as we await the recommendations of the NDIS Review. Many people in our community put a great deal of time and effort to contribute to the Review and we are keen to know what will be recommended. 

I met with co-chairs Bruce and Lisa, who kindly agreed to a final interview before handing in their report to the government. They were especially keen to speak with the Every Australian Counts community. A lot was revealed during the interview and it is clear that the NDIS review will be recommending major changes to the NDIS.

You can view the full interview by clicking on the Youtube link below or listen to the podcast on your preferred platform here:

Here is a quick summary:

The Review will be saying that the NDIS should not be as concerned about a person’s primary medical diagnosis. They want the focus to be on functional capacity instead. We have heard many reports that for people with rare or multiple diagnoses, the focus on a primary diagnosis can be a real problem, so this could be a welcome change. On the other hand, this change might slow down access to the scheme and force people to undergo lengthy functional assessments. So we will have to keep a close eye on that.


And this is the big news:..Assessments are back on the table

The Review will be recommending assessments and they won’t be “independent”. They will be performed by government staff or government contractors, so there will be some serious conflicts of interest that will need to be managed. The focus will be on support needs rather than functional impairment, which is important, especially for people with intellectual disability.

The assessment will result in a budget allocation that will be determined to be “reasonable and necessary as a whole”. Capacity building funding will be part of your for core budget, so NDIS funding will be more flexible.

Planning as we know it will be very different as it will come after an assessment that will determine your budget. So you will go into planning knowing your budget. There will be no more line by line claims for additional supports

The Review will also be calling on mainstream services to meet the needs of people with disabilities and have introduced a new jargon word, “foundational supports”. Foundational supports are mainstream services that everyone with a disability should be able to access, including people who are not on the NDIS. This is clearly an attempt to address the “only life boat in the ocean” and “oasis in the desert” scenario that Prof Bruce blames for the increased number of participants on the NDIS.

How these foundational supports will magically appear is worth asking (so I did in my podcast). We have been calling for accessible and inclusive mainstream services for years and very little has changed. What will be different this time? We are worried that people with disabilities will again fall through the cracks if NDIS supports are taken away before mainstream services become inclusive and accessible.

If you are feeling concerned, then you are not alone

Having experienced the 2021 independent assessment trial myself, I’m worried about what this version of assessments will look like. We shouldn’t have to repeatedly prove that we have a disability. We don’t want intrusive and ineffective tests imposed on us by so-called “experts” who don’t know us. However, I take some comfort knowing that Bruce was a strong advocate against independent assessments in 2021 and the government has repeatedly committed to codesign any changes to the NDIS. In fact Every Australian Counts is actively involved in the co-design work.

The government needs to stand by its promise

The government needs to uphold this commitment when considering these recommendations and remember its promise to rebuild trust with the disability community. The NDIS will only work when it is codesigned by people with disabilities, so our message to the government is clear – nothing about us without us! The government needs to make the NDIS Review recommendations public as soon as possible and ask us what we think before making any decisions.

There’s a lot to discuss so let’s get together!

We are excited to let you know that we will be hosting regular online forums to bring together our Every Australian Counts community, share the latest NDIS and here directly you about your concerns and needs. We will have NDIS staff on hand to explain how NDIS participants will be affected by the new system and answer your questions. I hope to see you there.

Register here

Do you want regular updates about the NDIS? Then sign up to our newletter on the bottom of our homepage www.everyaustraliancounts.com.au

What does the Royal Commission say about the NDIS?

The Royal Commission has made some big recommendations. Three key changes that follow are :

  • A disability rights act to enshrine international human rights into Australian law. The Act should reflect the UN Convention on the Rights of Persons with Disabilities and ensure that any policies or major changes impacting people with disability are done in consultation with the disability sector.
  • A new National Disability Commission. This would be an independent statutory body run by a person with disability. Its role would be to ensure the Disability Rights Act is enforced correctly and ensure positive outcomes for the lives of people with disability.
  • A federal government portfolio for disability, with a dedicated minister

But what does the report say specifically in relation to housing, support and the NDIS? Here is a quick overview:

Improve access to alternative housing options

There needs to be more accessible and affordable housing options for people with disability. The NDIA should research where and how people with disability want to live and consider this when developing new projects.  Participants wanting to move between supported accommodation should be supported to do so by independent advocates and support coordinators. NDIS home and living funding  (Supported Independent Living, Specialist Disability Accommodation and Individualised Living Options) should be simpler and more flexible.

Phase out group homes

5 out of 6 Commissioners recommended an end to group homes, of which, 4 recommended a 15-year plan to close group homes entirely.   The plan includes assessing the current availability of alternative housing, supporting people to live in individual homes and piloting alternative housing models to meet future housing needs. According to this recommendation, building of group homes should stop within two years and transitioning people into group homes should stop within five years. Supporting people to find individual housing will reduce their exposure to neglect and abuse. The plan would not force people to move out of their group home if they don’t want to. 

Embedding human rights

Disability service providers should prioritise human rights when designing and delivering services. They should be supported to do this by a capacity-building program commissioned by the NDIS Quality and Safeguards Commission. The way that services are delivered should be codesigned with people with disability, disabled people’s organisations, and disability representative organisations. 

The role of support coordinators and independent advocates

Participants should not receive other services from the same organisation that provides them with support coordination. Participants at a heightened risk of violence, abuse, neglect or exploitation, particularly those living in supported accommodation, should receive funding for support coordination. Participants living in supported disability accommodation should be connected to an advocacy organisation.

Choice and control over how services are delivered

The National Disability Insurance Scheme (Quality Indicators for NDIS Practice Standards) Guidelines 2018) should reflect that Participants have the right to be adequately supported to make informed decisions about the support they receive. Participants should also be supported to communicate their decisions and goals. 

A national disability support worker registration scheme

It was recommended that a national disability support worker registration scheme be established by 1 July 2028. This would mean mandating the NDIS Worker Screening Check for all disability support workers and establishing a code of conduct and minimum standards for registered disability support workers, including support coordinators. According to this recommendation, the scheme should consider accreditation of workers’ qualifications, experience, capabilities and skills and  be co-designed with people with disability, disabled people’s organisations, and disability representative organisations. 

We were disappointed that this section of the report did not include the perspectives of people with disabilities. To uphold the principles of choice and control, it will be essential that such a scheme provides NDIS participants with the option to choose who supports us, including the right to engage workers who may not be registered with the scheme, if that is our choice.

Provider of last resort

The Australian Government should ensure there are service providers available to people in crisis situations, people at risk of losing their accommodation and disability services, people whose needs cannot be adequately met by existing services and people living in remote areas. 

What happens next?

The federal government is setting up a taskforce to coordinate its response to the report. It is recommended Federal, state and territory governments should each publish a written response to the Final Report by 31 March 2024.

If you need support, you can contact:

  • Lifeline- 13 11 14
  • 1800Respect – phone 1800 737 732
  • Beyond Blue- 1300 224 636
  • QLife- 1800 184 527
  • 13Yarn- 13 9276

Every Australian Counts Codesign Work with NDIA

We want to hear from you about what isn’t working in the NDIS Planning process, and your ideas for improving how NDIS Planning works.

Every Australian Counts is one of  27 Disability Representative and Carer Organisations (DRCO) working with the NDIA to codesign the improvements to the NDIS.  There are six Working Groups:

Each Working Group includes NDIS participants, members of the Independent Advisory Council (IAC), DRCOs and NDIA staff.  Every Australian Counts is part of the Better Planning Working Group, which will meet once every three weeks. The first meeting was held on the 18th July 2023.

Some of the issues raised at the first Better Planning Working Group meeting include:

  • Need for better training for NDIS representatives.
  • Participants need to see draft versions of their NDIS plan before its finalised.
  • Lack of support to participants and nominees to understand and use our NDIS plans (worse for people from Culturally and Linguistically Diverse communities). This includes support to understand and use the participant portal and NDIS App.
  • Preferred method of communication not being used by NDIS representatives. Getting communication right from the beginning is key.
  • Issue of primary disability and secondary disabilities, and that this doesn’t work for many people.
  • More face-to-face planning needed – and meeting with the NDIA planner (decision-maker) direct.
  • Culture within the NDIS needs to change – currently very adversarial.
  • Need for greater flexibility in NDIS plans, especially for regional, rural and remote participants.
  • Information in participant NDIS files may be incorrect, and this isn’t being checked with participants. This can seriously affect how decisions are made.

The Working Group also started to brainstorm solutions to some of these issues, focused on four key areas:

  • Person-centred pathway
  • Improved communication to participants
  • Education
  • Defining the role of support coordinators and providers.

There have been three meetings to-date, with discussion focussed on improving communication to participants and monitoring how plans are spent.  This issue is the key requirement of the Better Planning Working Group.

We are waiting on the recommendations of the Disability Royal Commission and the Independent NDIS Review, which will hopefully lead to the Better Planning Working Group being able to focus more on how to improve the NDIS planning process itself.

Every Australian Counts representative in the Codesign work with NDIA, Nick Avery, was appointed Co-Chair of the Better Planning Working Group. She will be attending the monthly Implementation Steering Committee meetings, which provide oversight across all of the six working groups.

We will be hosting workshops via Zoom in the coming months.

The NDIA will post updates about the work undertaken by all six Working Groups on the NDIS website, and we’ll be sure to share this information with you over the coming months. We want to make sure that your concerns and ideas are heard.  This is our NDIS – lets work together to fix it!

The latest from the NDIS Review

Making mainstream supports accessible

The Panel believes we need to provide what they call ‘Community wide foundational supports’ alongside individual support. It would include information and peer support as well as support for adults with cognitive disability such as shopping, cooking and cleaning. Community wide foundational supports would also help children with emerging developmental concerns and delays.

Clarify eligibility and the definition of ‘reasonable and necessary supports’.

The Panel believes whether you are eligible for the NDIS should depend first on your level of functional impairment and need and only then on medical diagnosis.

Bonyhady says sustainability is fundamental to the human rights of people with disability and for this reason, the NDIA needs to have a clearer definition of ‘reasonable and necessary supports’.  He wants to bring an end to line-by-line budgets. Instead, he is proposing a planning process that will include an assessment that will lead to a budget that will have fewer categories and less restrictions.

Planning process

The Panel wants to break the planning process into three stages:

  1. Information gathering – a personalised comprehensive meeting to talk about support needs
  2. Flexible and transparent individualised budget. Only funding for equipment, Supported Disability Accommodation and Supported Independent Living would be used for a prior purpose.
  3. Budget into action

They committed to making sure that the design and implementation work of these planning steps  are done by NDIA together with participants, families, and members of the disability sector.

The 10 NDIS Review Reform areas

  1. Supports – Mainstream services such as health and education must become more inclusive and work closer with the NDIA.
  2. Improving participant experience -The NDIS needs to be more person-centred and consider intersectional needs of all First Nations people, people from Culturally and Linguistically Diverse (CALD) communities, people of all genders, and people with complex support needs.
  3. Access to the NDIS. – Access to the NDIS should be based on functional impairment’, not medical diagnoses.
  4. Definition of Reasonable and Necessary supports. – The NDIS needs a clear, and consistent definition of ‘Reasonable and Necessary’.
  5. Early Childhood – The support needs of children with developmental concerns and delays should be identified early in mainstream settings.
  6. Housing and Living. – This needs to be a consistent approach to people’s current and future housing needs.
  7. Intermediaries such as Local Area Coordinators (LACs), Case Coordinators and NDIS Planners – It needs to be made clearer whether these roles represent participants or the NDIS.
  8. NDIS Market – The NDIS Market is not delivering enough of the right supports in the right locations.
  9. Workforce – The NDIS needs a diverse, well-trained workforce.
  10. Quality and Safeguards – The NDIS needs an improved quality and safeguards framework. It needs to include foundational supports. There needs to be better information sharing between regulators.

Participants should be able to demand innovative and quality services.

Question and Answer

In the Question and Answer section of the meeting, the focus was on:

  • Making sure all services work with all children and not just children already in the NDIS process.
  • Making sure mainstream sectors such as health and education work with the NDIS so they are not silos.
  • Making sure young people are given information about how to access supports when they leave school.
  • Making sure young people are connected with people they trust and engaged in the community.

Key Message

The key message of the session was that every part of the NDIS – design, testing, implementation and evaluation should involve the people who use the system: participants, families and service providers.

Co-Chair of the NDIS Review Panel Lisa Paul said the NDIS should be “personalised, comprehensive, compassionate, expert and transparent”.

Stay Tuned

Every Australian Counts has a lot of questions about what is being proposed. Thank you for sending us your questions. Our Independent Chair, Dr George Taleporos, has been promised an interview this month with the co-chairs of the panel to get some answers. We look forward to bringing that to you very soon.

In case you missed it: EAC and the NDIS Review’s online Q&A

What even is this NDIS Review?

What’s the deal? What’s it all about? Who’s involved? Why another review/inquiry/whatever? How is this different? Who’s involved? And please – tell us we don’t have to write even more submissions saying the same things we’ve all been saying to other inquiries for years….?

We didn’t get much time to put that all together – so if you missed it you can catch it all below in the video recording or transcript.

So if you’d like to hear the questions people asked, and what the NDIS Minister Bill Shorten, and Bruce, Lisa, Dougie and Kirsten from the NDIS Review panel said you can watch or listen to the video below or check out the transcript.

So how can you make sure the NDIS Review hears from you?

There are a couple of different ways, and many more in the works.

But for now, to keep it simple:

You can check out the NDIS Review website to:

  • Get the latest news and info
  • join their email list
  • use their contact form

Or, if you’d like to get involved right here via EAC there are also a few options:

Video

Transcript

JEAN COTCHIN, EVERY AUSTRALIAN COUNTS:

Hi, everybody, welcome.

I think I’ll just wait a few more seconds before we get started to make sure that we’ve given people time to connect.

I can see we’ve already got people have joined us and it’s growing very quickly.

Thanks, everyone.

Thank you very much for joining us today, especially because we haven’t given you very much notice.

It’s really encouraging and pleasing to see so many people, you know, really keen to engage in this very exciting new process that will make a really big difference to the future of the NDIS.

With that being said, I’ll – we should be good to go now.

Thank you.

Before we get started, I would like to acknowledge that I am on the lands of the Ngunnawal people today here in Canberra and in the spirit of recognition, we acknowledge the traditional custodians of country throughout Australia and their connections to land, sea and community and I’d also like to pay respects to elders past and present and extend that to all Aboriginal and Torres Strait Islander people who are with us here virtually today.

I’d also like to acknowledge all of the people with disability, family members and supporters who have worked really, really hard over very many years and decades to bring us to this exact moment in time.

We’re almost years in and this review is going to give us a really important … it’s just a really important moment.

As you’ll hear this afternoon, it won’t work and it cannot happen without all of you.

So thank you.

Before we get into it much more, I just wanted to let everybody know that we have two AUSLAN interpreters here with us today and for those of you watching online, you should see that we have one-at-a-time pinned to the screen so they’re visible at all time, but will take it in turns so they get to have a rest.

I also need to remind myself not to speak too quickly and also for our other speakers to not speak too quickly, because it’s hard work, AUSLAN interpreting.

We also have captioners.

So if you would like to have captions open, there are two options.

There should be a button in the bottom left corner of your screen that says “CC” and that will open them up and you can change the appearance of them.

But we also have the link in the Q&A section which is a bit like chat which allows you to open the captions up in a separate browser window.

If you have any tech or accessibility problems, please use that Q&A function similar to chat and the good people here, who are helping with this at the NDIS Review team with the Department of the Prime Minister and Cabinet will do what they can to help you out.

So hopefully I have covered all of the housekeeping.

So the purpose of today is to put as many people with disability, family members, workers, advocates, stakeholders in the same virtual space as the minister for the NDIS and the new NDIS Review chairs and panel.

As well as the people involved behind the scenes so that they can explain things to all of you and so that you can ask some questions and find out more, and this is … we’re really pleased that every Australian has been invited to help with this part, this very first step.

It’s a demonstration, I think, of the sincere commitment to make sure that people with disability and families and supporters are genuine partners in this review.

If you haven’t already, there has been a form on the Every Australian Counts website where we have received questions and comments from very many people in our community, also on social media.

But we are also inviting you to use the question and answer function in this Webex to send through your questions and we will do our best this afternoon to get through as many as we can from the pre-submitted questions, but also the questions that are coming through from you now.

Don’t worry that once you put your question in, you won’t be able to see it in the same way that you can in a Zoom, but it will be visible to those of us behind the scenes.

Please don’t let that discourage you.

That’s probably enough from me.

I think you’re all keen to hear from our new-ish minister for the NDIS Minister Bill Shorten.

Over to you, Minister.

MINISTER SHORTEN:

Thank you, Jean.

Let me just say to everyone that I am really excited about the process of change that we’re on.

I’m going to talk a little bit more about that and then hand over to the chairs and the panellists and answer questions.

But first of all I’d just like to acknowledge that wherever we are, we meet on Aboriginal land and I pay my respects to elders past, present and emerging.

I also want to thank everyone who’s made the effort to be here and I know I got one email saying that we need to be on Zoom as well as Webex.

We will make sure we do everything we possibly can to engage people.

Thanks to Frank who sent me that message this morning.

Well, it’s years on almost since the foundation of the NDIS and their first trial areas.

The scheme was due to be reviewed at the -year mark as part of our election policies before the last election, we said we would bring forward that review.

That’s really what’s triggered today’s session or discussion.

I won’t try and summarise years in seconds, suffice to say that for some people, for many people hopefully, the development of the scheme has been a positive proposition and experience.

At the very least, the fact that with so much unmet need has emerged in the last nine-plus years shows the need for this scheme.

But there has been too many negative experiences, in my opinion.

Too much red tape, too much where the NDIS participating in it, doing the forms becomes like a second full-time job.

There was the terribly shocking proposal by my predecessors in government to introduce just rampant unfair cuts to the scheme and cuts to people’s packages and the vehicle, the trojan horse, of independent assessments.

So there has been lots of negatives as well and we want to rebuild trust.

Part of rebuilding trust we have already started to do in the last three -plus months.

We’ve got a new chair of the scheme, the first person with lived experience, with disability, Kurt Fearnley, a remarkable Australian.

We’ve got a new CEO of the scheme, Rebecca Forkingham, new board members.

What we’re also doing is tackling some of the hard issues, getting people with disability who are stuck in hospitals, even though they’re eligible for discharge, because the system hasn’t been quick enough to try and help out their plans and hopes and dreams.

We’re also tackling the legacy court cases, all those people who had to go to the AAT, many of whom for decisions which they should never have had to go to court to maintain what they had.

So we’re tackling those legacy cases.

Part of rebuilding trust isn’t just that.

Part of rebuilding trust has also been making sure that we passed on the payments, the increased payments, for disability support workers in the beginning of July with the price increases to the NDIS.

We know the scheme can’t survive without making sure that the people who work in it are appropriately and fairly remunerated.

So we’ve been doing a fair bit, but this review is another step towards us rebuilding trust.

This review is incredibly important.

You see, even in the business media today and yesterday a lot of discussion about the scheme and its sustainability, but sometimes by people who don’t look … they perhaps look at the scheme through too narrow a lens.

We want to use the review to change how we view the scheme.

Of course we want to stop waste and stupidity and, you know, inappropriate invoicing and all of that.

I think we can and should.

But what we want to do is change the view of the scheme from being a series of line items to viewing it as an investment.

I grind every time I get asked in the media about cost when they never ask about benefits.

It’s a legitimate discussion to make sure taxpayer money is being used appropriately and no-one disagrees with that.

But I think we also need to use this review to look at how we use the scheme to invest in people.

That’s an important part of what’s motivating me.

Now, with the review I just want to say to people who have gone, “Oh my Lord, not another review. We’ve submitted to this and been consulted on that and nothing ever happens. We know what needs to be done. Why do you need to review it?”

I just want to say to people who might have those views that we’re not starting from scratch.

It’s not a blank sheet of paper.

I, and the government, appreciate that a lot of the solutions have already been identified, they just haven’t been acted on.

So we want to look at what’s been done in the past.

That should also mean for people who want to contribute to the review that you don’t have to write lengthy, viable length submissions.

I don’t want people to have fatigue about it.

I want them to have a sense of positivity.

Not only is that an important part of the view, but I think the most fundamental part of the review is co design.

I think too much of what’s happened in disability in recent years has been the re-emergence of, for want of a better term, paternalism, we will do things to people, not with people and not allow people to be empowered to make decisions.

The whole spirit of the scheme is about empowering people, giving them agency in their own lives.

The whole point of the scheme is to provide hope and to look at the outcomes that people want, the right to an ordinary life, for example so co design is a fundamental part of this review process.

No doubt we will talk more about what that means.

We’ve got months, but obviously there’s things which we note that are known by the disability community and the disability world now and where the review and myself and the state ministers seek see consensus emerge, we don’t have to wait months to change some of the things which really frustrate people in the scheme.

There will be a massive engagement process and I will let others doing the review talk more about it.

But in summary, this is how we get the scheme back on track.

This is how we deal with the challenges of, you know, the growth trajectory.

But fundamentally it is about reorienting how we run the scheme to being a co-designed scheme, an optimistic experience for participants where we focus on investing in people to give them their best outcomes in life.

So, Jean, you know I thank you for what you’re doing.

I look forward to the collaboration.

Together we can make this the best scheme in the world.

We’re certainly not at that point yet.

But this is something we do together.

To be honest, I’m pretty excited.

JEAN COTCHIN:

Thanks, Minister.

I’m excited too.

It’s a relief to hear many of the things that both yourself and members of the review team have been saying.

I think particularly that people don’t have to tell their whole stories all over again, but I will not say too much more and let the panel members speak for themselves directly to you about it.

Just before that, for anybody who missed it, this review was announced by the Minister on Tuesday this week.

Basically it’s an independent panel, a group, for lack of a better word, of … it has two co-chairs.

We have Professor Bruce Bonyhady who many of you will be familiar with as the inaugural chair of the NDIA and one of the original architects of the scheme and Ms Lisa Paul who some of you will not know very well, but you will soon, and we’ve got five other panel members, Ms Judy Brewer, Dr Stephen King, who unfortunately can’t be with us here today for personal reasons, Mr Kevin Cox, who I think maybe we don’t have online.

And a couple of very familiar faces I imagine, especially to the Every Australian Counts community, Dougie Herd and Kirstin Deane, our excellent former campaign director, so welcome to you all.

Thank you very much for being here and being ready to hear from people and hopefully get to say something too.

For now, I would like to introduce co-chair Ms Lisa Paul.

Over to you, Lisa.

LISA PAUL, CO-CHAIR:

Thank you very much, Jean.

I just wanted to say, Jean, that this occasion, this webinar, through Every Australian Counts, is actually the first kind of formal gig we’ve done as a review panel.

So this goes to show, you know, that we really, really, really want people with a disability and their carers and families to be the centre of the review.

So I do feel really honoured that the Minister has asked me to co-chair this review.

He’s been a champion of people with disability for longer than I can remember.

I feel really quite humbled to work with you, Bruce.

Without Bruce, the scheme wouldn’t even exist.

As the first chair of the agency, you know, I think you can take a lot of pride in a lot of the early achievements.

We do know that the scheme needs to improve.

So the review will make people with disability, their carers and families the centre of the review.

You know, this amazing panel, they know, like you do, what needs to change in the NDIS because they’ve been saying so for years and years and years.

Like the Minister said, we will not be reinventing the wheel.

We will look carefully at everything that’s been said before and everything you’ve said before and then build on that with you.

So we hope that by working with you we can make the scheme simpler, fairer, more predictable.

You know, I really hope, in my heart, that we can get the scheme to a point where a person with a disability, or the parent or carer, can have absolute confidence that everything will be absolutely fine when the carer or parent is no longer around.

I would love us dearly to rebuild trust in the scheme and confidence and pride.

You know, not just amongst participants, but for all Australians.

Now, we are going to work … we’ve committed to work closely with people who are poorly served by the scheme.

So we’re going to work really closely, for example, with Aboriginal and Torres Strait Islander peoples and their representative organisations and with people whose first language isn’t English and their organisations.

And also work closely with rural and regional and remote communities.

We want to get back to the original intent of the scheme, which is about independence, you know.

Whether that means getting the supports that the scheme offers or getting a job or getting accommodation, you know, we want to focus on what outcomes the scheme is getting as well.

We actually want to sit down with workers in the scheme and their employers because, you know, let’s face it, they need to be responsible for services that are safe, services that are consistent and appropriate and affordable.

We do feel a great sense of responsibility, don’t we?

I will hand over to you, Bruce.

Maybe I’m handing back to Jean, I’m not sure.

JEAN COTCHIN:

Thanks, Lisa.

Thank you so much.

I’m very happy for us to jump over to Bruce now.

Thanks, Bruce.

BRUCE BONYHADY, CO-CHAIR:

Thank you, Jean.

Can I just say how delighted I am to be here today with you.

You are the group of people who have been at the forefront in recent years of defending the NDIS.

Now what I hope is that you will be at the forefront of people who are going to help us ensure that the scheme lives up to its original intent.

So you’ll make the shift from playing defence to playing offence, you know.

So we can make this scheme the best disability scheme in the world We really want to know your thoughts, your ideas about what’s going to work, what has worked in the past, what hasn’t worked in the past, but most importantly what’s going to work for the future.

So Lisa and I are in Perth today because we’re going to attend the Disability Reform Minister’s meeting that’s being held tomorrow.

We’ve begun today in exactly the way we are going to continue, which is we have been meeting with the disability community, particularly people with disability here in Perth, because we want to know from them what issues they’ve faced and their ideas about what needs to happen now to ensure that the scheme delivers for all people with disability.

How we reach out to those people who haven’t been heard in those remote communities, those people with very complex support needs, people with intellectual disability, people with communication challenges, we really need to design the scheme to the people with the most complex needs because I think if we design for the most complex, not in all cases, but in many cases, we will also find the solutions for those with less complex support needs.

I’m delighted to be working with Lisa, with the expert panel, with the secretariat that’s based in the Department of the Prime Minister and Cabinet.

We’re all committed to ensuring that this review really achieves great impact.

But ultimately what we can do is limited.

This review needs to belong to you, just as the scheme belongs to the people with disability and the Australian community.

This review also belongs to you.

We’re going to look at all of the issues you’ve been telling us about, particularly in relation to the participant experience, the participant journey and how we can move to a more rational relationship between the NDIA and participants and their families, how we can put people with disability back into the centre of the scheme We’re also going to look at the supports available for people who are not NDIS participants, because as many of you know, the NDIS today is an oasis in the dessert.

We’re also going to look at the scheme sustainability, but as the minister has said, we want to shift the debate to one which focuses on the scheme as an investment scheme, as an insurance scheme and one which builds and contributes to great outcomes for participants, that supports their social and economic participation and helps them to build independence.

We’re going to look at the interfaces with mainstream services and we know these are issues that you’ve raised in relation to previous reviews.

We’ve got an enormous amount of information about what’s not working.

We’re going to address these issues, but we’ve got also an enormous amount of data and evidence, and that’s what we’re going to build the review on.

We’re in a far better position than we were a decade ago when the scheme began, when we had none of this information.

So let’s use that information together to build the best disability system in the world.

So back to you, Jean, and I am really looking forward to your questions and being part of this discussion, not just today, but over the whole of the next months.

Thanks, Jean.

JEAN COTCHIN:

Thank you, Bruce.

I hope that helps give people hearing about this for the first time some hope in the same way that it’s given me some hope.

I know that everyone has just had a really utterly awful few years and it’s going to be … it’s going to take a big leap of faith from people in our community to dare to feel hopeful again, but I personally feel confident that this review is going to get us there.

Thank you for sharing all of that.

I’m going to give Dougie a couple of minutes to share with us.

Hi, Dougie, nice to see you.

If you wouldn’t mind just telling us how you feel about being part of this panel and what you hope it can do.

Over to you, Dougie, thank you.

DOUGIE HERD:

Thank you very much, Jean.

Good afternoon, everyone.

My name is Dougie Herd.

First of all, I’m super happy to be with everyone here online, super, super happy.

I’m in Canberra, so I want to pay my respects to the Ngunnawal and Ngambri peoples on whose land I’m sitting.

I want to thank Minister Shorten for asking me to contribute to the review panel and its work, to say how much I’m looking forward to working with Bruce, Lisa and the fellow panel members and also how much I am looking forward to working with all of you because I gather there dreads of us on this big meeting today.

I think this is like the Every Australian Counts campaign says, it’s our NDIS, so let’s make it work.

But here’s the true thought that I have – that’s a very scary thought and it’s an enormous responsibility and, to be honest, all I can think of is this – don’t screw it up, Dougie.

Do not screw it up.

Except if I’m being honest, the word I really thought of starts with an “F”.

For goodness, sake, Dougie, don’t screw it up.

The only way I know to contribute to this panel and to not screw it up and make a mess of it is to do this sort of stuff.

Together we review this megabillion dollar -person National Disability Insurance Scheme in all of our mix, beauty and diversity of humanity, we do it honestly, frankly, respectfully.

We all say what we believe to help get back on track the NDIS, or in some areas to get it on track for the very first time.

I think this is going to be really hard and I also think a year isn’t very long, although it seems like a long time.

But if we get it right, and for me what I mean when I say “Get it right” is we put people with disability be genuinely at the centre of decision making, with real choice and greater control over their reasonable and necessary supports that are funded in a sustainable way by the whole Australian community investing in everyone’s future.

If we get all that right, this period of review will be hugely rewarding.

I think that to get it right every single voice needs to be heard.

All the communities of Australia, in all of their diversity, need to speak to one another about our different experiences.

All points of view, even those I disagree with, perhaps especially those I disagree with need to be heard, and my job as a review member is to sit and listen.

Whoever I am, you are, participant, carer, family member, trade union member working for an organisation like I’m the Chief Executive officer of, provider, advocacy organisation, we all need to join in this big conversation.

Why? Because I think we want to get things right.

As people have said, the NDIS is a really good idea.

It was when it was set up.

It now supports over half a million people and my guess is if you’re joining this webinar today, you fundamentally support the idea of the NDIS.

You may, like me, have an NDIS plan.

You may, like me, be a provider of NDIS-registered services.

But my guess is you also believe that there’s tonnes of room for improvement and that we can make this NDIS better and that we can do that together.

Why do I care about all this? Well, some people might think it’s because I’ve got a vested interest.

I’m an NDIS-registered provider.

I worked for the National Disability Insurance Agency over years ago to help set up and launch the National Disability Insurance Scheme.

But my vested interest is super, super personal.

Years ago, I went swimming with my mates in Scotland.

I broke my neck in three places.

I’ve used a wheelchair ever since and the one I’m sitting in here today was funded by the National Disability Insurance Scheme.

Every single day of the last years of my life, a human being has come into my house, helped me to shower, helped me to get dressed, get into my wheelchair, with the purpose of helping me to get on with my life.

My vested interest in all of this is that I am an NDIS participant and the quality of my life depends on the quality of the National Disability Insurance Scheme.

It has to be the best scheme it can be, and I think you can repeat different versions of my story times in all their different ways.

So I think if we cooperate, if we work together, share ideas, if we agree furiously and disagree respectfully, if we look for solutions, and as the Minister said at the upfront and then we implement those solutions, because we all know what they are, I think then we’ll succeed.

I think that’s what this review is about.

Better lives.

Your life, because you’re all here, and my life because I’m selfish.

I want a good life.

That’s the only reason I’m here today and I’m grateful to be given the opportunity.

I hope I’m part of building a better future.

I want to work with everyone who’s here and I want to thank Jean and the Every Australian Counts campaign for helping all of us to get us to this point today.

JEAN COTCHIN:

Thank you, Dougie.

Very well said.

I think we will get started now with questions from people who are not us.

We’ve kind of got … we have a handful which are sort of match-ups of questions we received a lot of very similar versions in the Every Australian Counts website before today and also up to a couple of hours ago.

There’s many, many excellent questions coming through on the chat as well.

So I will have some people helping me work out which questions to ask.

And I will start with this one for the Minister.

It is quite a common one that we got a lot.

So, Minister Shorten, what can you say to people about why is this review different than any other sort of enquiry about the NDIS and being run out of … so the review team are supported by staff from secretariat support, is the fancy way of saying it, from the Department of the Prime Minister and Cabinet and one person asks us being run out of Prime Minister and Cabinet means, to me, that you are looking to cut costs or cost savings.

That one’s for you, Minister.

MINISTER SHORTEN:

Thanks, Jean.

Can I just thank Dougie? Whenever you talk, I feel like storming the barricades, then I realise we’re in Government now, so I’ve got to just have a cup of tea.

Listen, the reason why the review secretariat is being run out of Prime Minister and Cabinet isn’t a bad one, it’s a good one.

First of all, look who else could do it.

We could have run it out of the NDIA and the Department of Social Services, but that’s a bit like being asked to mark your own homework, isn’t it? So it’s got to be independent of that.

If it had been run out of the Productivity Commission, people, I think plenty of the people in the sector when I consulted them said that would have looked like a cost-cutting exercise.

So by a process of elimination, the beauty of the prime minister’s, for that department is that when you do reviews, then you’ve got to explain to the central government agencies like prime ministers and Treasurers what the review means.

So that invariably builds in delay.

It means that some good ideas just by the process of attrition get burnt off the proposals, whereas if we’ve got the central government people involved with ourselves from the get-go, it means you don’t have to say everything twice and it means that there’s a lot better chance that the process of the review educates other people.

Let’s not kid ourselves.

A lot of people don’t know about disability.

A lot of people don’t know about the NDIS and when they do talk about the NDIS, it’s just in terms of, you know, a perceived cost.

So, if you like, the review educates people who need to know better what they need to know.

So it’s very strategic and, you know, all of the people … there will be people in this webinar, most of you will know at least one of the panellists, or indeed not more of us.

What unites this panel, in my opinion, and myself, and all of you, is we just want the best for the scheme.

We’re not interested in, you know, other interests.

We want the very best for the scheme.

So that’s why we’re doing it there.

The other thing is states and territories have a crucial role to play here.

We all know that not everyone is on the NDIS.

It wasn’t designed to have everyone, but we need to make sure that states and territories don’t skimp on their responsibilities to a national disability strategy and to services outside the NDIS.

So they’re involved in all of this too.

I remember what it was like to build the first NDIS and it was building a coalition, not just the people who were most committed, but educating other people to come with us.

So the structure of this review is a key part of where it’s based as part of that educative process for everyone else to realise how good the NDIS can be.

JEAN COTCHIN:

Thanks, Minister, I’m sure that was helpful.

I didn’t really understand myself much about how important the Department of the Prime Minister and Cabinet is in this process too.

As always, we’re running a bit short on time.

I will stop blabbering on too much.

This next question is a word-for-word one we got but also repeated a lot.

The question is, “Do we really need a year-long review? I say no, we just need human beings to take back this organisation.” NDIA, I assume.

Let’s give that one to Lisa.

What do you think, Lisa?

LISA PAUL:

Fabulous question, for starters.

Look, a year seems like a long time and then it seems, on the other hand to us, it seems like a short time.

The reason it seems like a short time is that if we came out and just said, “This needs to happen, that needs to happen, this needs to happen, just do this, here’s the solutions,” then we could take less time.

But what we actually want to do is say, “And this is how things should be done.” Like, the how things get implemented is so important.

We actually want to talk about that.

That makes a difference to all of you who are on this today, you know, how things are done.

Actually, it is to the question’s point about kind of putting humans back in charge.

You talked about relational.

The other thing too, though, is that we’re not going to wait … as the Minister said, we’re not going to do this review like other reviews.

So we’re not going to sit in a darkened room for a year thinking deep thoughts and then come out with a -page report that gets put on a shelf.

Nor are we going to do all the right things and come out with an actually really good report, with lots of sensible recommendations, but then get ignored because they’re not implementable, they’re not easy to work or whatever.

Then besides all that, we’ve already committed to putting you at the centre.

So the review is going to be done differently and probably that process means it will take longer too, and that’s just the way it is.

That’s a good thing.

Then the other thing is if we can see … and the Minister’s put this in the terms of reference.

If we can see things that are … that could be done sort of now, then we will say it, you know.

If disability ministers and Minister Shorten accepts that, then it will happen within that year.

So please be assured that if we can come to stuff that’s quicker, we’ll do it.

Thanks, Jean.

JEAN COTCHIN:

Thank you, Lisa.

This next one is a good one, very common, and I will give it to you, Kirsten.

How will people be able to have their say in this review? How can we assure that we will be heard including how will we be able to provide a written submission?

KIRSTEN DEANE:

So lovely to be with everyone this afternoon.

Awesome question.

It is already answered by a couple of people this afternoon which is this is not going to be your bog standard government review.

My sincere apologies to all the lovely public servants that are on the call today, but we are not going to do this the way that other reviews have been done.

The first way that you’ll be able to have your say is by doing absolutely nothing at all.

As you’ve already heard this afternoon, what we’re doing to do to start off is we are going to look at all the submissions that people have made to the various inquiries and consultations over the last few years.

If you think about things like the Tune Review, the various inquiries that the Joint Standing Committee have done, the consultations around independent assessments, even some of the evidence that’s been given directly to the Royal Commission, we’re going to have a look at all of that.

We might even have a look at some of those submissions that that pesky group EAC made over the years to the various inquiries and consultations.

So we’re going to look at all of that and then we’re going to come back to you and say, “Did we get it right? Have we missed anything? Did we hear what you had to say? We’re going to say things like, “What’s changed since you last had your say? Are there other things that we need to consider?” So we’re going to ask those kinds of questions.

Then we’re going to come to you and say, “Okay, given that we know all of this, what are the solutions?” We’re going to be really solutions-focussed.

We’ve spent an awful lot of time in the last few years talking about what the problems are.

Actually what we want to know from everybody who’s on this call, everybody in the EAC community and all of the participants and their families and the organisations that support you is what’s going to work on the ground.

If this is the problem, what is going to work for you? So that is what we’re going to do.

But just as important and perhaps most important to me is the how we’re going to do it.

We’re still honestly working that out.

There will be standard ways to have your say, written submissions and things like that.

But we know that that really doesn’t work for everyone and so we want to have multiple ways for people to be able to engage with the review, have their say and make sure that they have their voices heard.

So there isn’t going to be one way, there’s going to be lots of ways.

In part, the reason we haven’t locked everything down by now is actually we want to hear from you.

How do you want this to work? What processes would work for you? How do you want to be able to have your say and contribute to the kind of solutions that we need? In particular, we really want to make sure that we hear from people that you don’t usually hear from when you hold government reviews.

We really want to hear from people who don’t usually turn up to, you know, all those workshops and round tables that we’ve all been to with the butcher’s paper and the sticky notes.

We know that doesn’t work for lots of people.

So we really want to do some hard thinking and talk to you about how we talk to people who don’t usually participate in these processes so that they have their voices heard.

The last thing I want to say is that this review has a really, really, really big job to do.

If it was just up to the panel, that would not be a good thing.

It’s not the job of the panel to work these things out.

I think it’s our and my job to work with you to get the recommendations that the review makes right.

This will only work if we all work together.

I’ve been in an enormously privileged spot in the last few years to see what awesome things that the disability community can do when it comes together and sets its mind on creating change.

I’ve seen what we’ve been able to do.

Unfortunately, in the last couple of years, a lot of that time has been spent pushing back on things that we didn’t think would work.

We’ve got an awesome opportunity at the moment to turn around and go what will work and how can we all work together and build it, so that’s what I’m most excited about.

I really encourage Jean … Jean will give everybody details I’m sure at the end of the webinar how you can sign up for updates so you can get involved.

But I really encourage Dougie, Bruce, Lisa, really encourage you to get involved and have your say because the only way this is going to work is if we all work together.

JEAN COTCHIN:

Thank you, Kirsten.

That’s good stuff to hear.

It sounds a bit familiar, some of it too, which is awesome.

Following on from that, just quickly, if you don’t mind, Bruce, because we’re very quickly running out of time, for people who have … who have already contributed to many other reviews, and Kirsten did kind of answer it, how can I share with you what I’d like to contribute to this review? Sorry, that one’s for you, Bruce.

Apologies.

BRUCE BONYHADY:

Sorry, Jean, the question was? What I’d like to contribute to the review?

JEAN COTCHIN:

Yes, for people. … I have provided my views previously to other reviews and inquiries.

How can I make sure that you get that?

LISA PAUL:

So if I’m someone who’s contributed before, how can I make sure that you will see that and I think …

BRUCE BONYHADY:

Sorry, my hearing these days is not as good as it used to be.

So, look, the way we’re going to do this is we’re going to go through all the submissions that people have made, to the Tune Review, to the Joint Standing Committee, to the NDIA, to the Royal Commission, to make sure that we’ve heard what you’ve heard, what you’ve said, and then build the review on that.

I just want to pick up also the fact about the structure of this review.

I think it’s enormously significant that as an expert panel we’re reporting directly to ministers.

So we’ll be able to take our findings directly to the decision-makers.

Because when I look at what’s happened in the past and the gaps that have opened up between what you said and what’s been done, it’s often been because those views have not been taken directly to the decision-makers and then implemented through the NDIA and through the NDIS Quality and Safeguards Commission.

So I think there’s a whole lot of things here that we’re trying to set up to make sure that this review is highly impactful, really does make a difference and really does reflect what people want.

I think it’s also important to recognise that the challenges with the NDIS have not developed overnight.

Not all of them are going to be solved overnight.

So the year is actually quite important to us so that we can get to some of those more challenging problems, some of those more deeply entrenched issues and start to design with you solutions that are going to work.

In some cases, it will also give us an opportunity to trial some of those solutions.

So I think it’s an exciting time.

I’m just humbled by the fact that I’m now going to get an opportunity to work with Lisa and others, and with you above all, to try and work out the solutions to these problems.

Back to you, Jean.

JEAN COTCHIN:

Thank you, Bruce, and to everybody tuning in or who has submitted a question in advance, I sincerely apologise, we are rapidly running out of time again.

There’s so many excellent things being said.

I will do what I can to try and make sure that we can do more things like this.

Just for now, I think we might have time for one or two more questions.

This one I’ll give to you, Judy, because we haven’t given you any time yet.

How will this review change how our current systems are working in, like, the planning process? You know, we’ve heard very many things about that over the years, but especially sort of right now to make sure that, like, support is really truly individualised for all sorts of different people.

JUDY BREWER:

I will try to keep it short.

The question is how will this review overhaul the planning process? I can’t answer the how, but I can tell you it will.

It will.

So get rid of the ” How”, because you’re going to tell us how it’s going to overhaul the planning process and we’re going to go through what you’ve hold us before and we’re going to listen and we’re going to work out how to overhaul the planning process.

What I can tell you is we will.

As someone whose son was diagnosed with autism over years ago and who is in the NDIS … my son is an NDIS participant, I go through that planning process, I get a little bit sick of having to educate the planners every time I go in.

I get sick of saying I brought my file, “Here it is.”

And they ask for something I haven’t got in the file.

I say, “Can I bring the filing cabinet as well?” Then they still ask for something else.

So I get it.

Autism, our son, he has a complex life, as we all are, we are all complex individuals, and that’s the word.

He’s an individual and he needs an individual plan and he needs someone to understand him and his needs.

I’m looking forward to your contributions on the planning process because I think that’s really central to our work.

Thank you.

JEAN COTCHIN:

Thanks, Judy.

I will go back to Kirsten.

Sorry to put you on the spot.

Will the review look at all the complaints people have made about the scheme?

KIRSTEN DEANE:

It will depend, to be honest, on whether you mean – sorry, I didn’t see the question, whether it’s the complaints that people made going through all the various inquiries and consultations and reviews that have been done or whether you specifically mean the complaints that have gone into the NDIA.

So that’s a really good question, actually.

It’s something that the panel members might be able to ask the NDIA to provide us some information.

I’d just be concerned about privacy and we might have to think about how we can get that information in a way that protects people’s privacy.

I’m sure that there must be a way to do it.

I reckon it’s a really good question, because where the complaints have come in will tell us about some of the problems, so it’s a really awesome idea.

And it is just proving why we want to talk to you guys and work with you guys, because this is the kind of information that we get.

It is awesome.

Can I take that one on notice and the panel will work out how we could get that information from the NDIA, making sure we respect everybody’s privacy.

JEAN COTCHIN:

Thanks, Kirsten.

Can I just add, I shouldn’t editorialise, but I’m really happy to hear when there aren’t solid answers to things yet because it means that there’s flexibility in this process, which I think is a good thing.

Dougie, how do you feel about, you know, family members who are providing a lot of support for people with disability who maybe really need some help from people close to them to be involved in this process? Are they able to be involved, Dougie? If so, how?

DOUGIE HERD:

Me, Dougie.

Sorry, I heard Judy.

I think we need to do everything to help.

Everyone knows me or everyone who does know me, I talk too much, right.

It just never ends.

There’s a relationship between a service system and people with disability.

Many people with disability need informal and formal supports to help them articulate a case, to feel confident about having a conversation, and what I want us to be able to do is to ensure that people with disability feel whenever they engage with us, or the agency or the commission, whoever it might be, that they will have with them trusted supporters and advocates, whether they are formal and informal, both an individual and a systemic level who could articulate with them, support them to express their point of view, and have whatever it is they have to say in whatever way they choose or are able to say.

Understood, received and acted upon.

That’s really, really difficult, I think, because we have a history that says, “The guys in the wheelchairs, they can do all these things that they’re supposed to be able to do, we see them, that’s fine. We all get on with it, apparently we’ve got no problems in our lives.”

But that’s not the case for everybody that we want to hear from and involved in this process.

When I had my accident all those years ago in Edinburgh, there were no such things as individual or systemic advocacy organisations, so we made them ourselves.

I’m an unapologetic supporter of and advocate for advocacy organisations that will speak up with bravery and courage exactly to get the message across for the people that they represent and all of those voices need to be there, including the formal-funded organisations, but also the peer support and family supports that are around the individuals who have something to say and we need to make sure we’ve got processes going on in all kinds of places, in all kinds of ways to allow those different voices to be heard so that we can get this right.

You know, it is difficult and challenging, but it’s not rocket science.

It’s about treating human beings like human beings and saying, “Okay, let’s fix it.”

JEAN COTCHIN:

Thanks, Dougie.

My apologies, everyone, we’ve already gone a minute overtime.

Before we wrap up, if people can stick around for an extra few minutes, I would like to ask the Minister to make a few comments after hearing some of the questions from all of you.

Thank you.

Over to you, Minister.

MINISTER SHORTEN:

There’s been a lot happening in the chat room.

I’m wrapped with the level of engagement.

I’m sure it’s only going to increase from here.

I just want to say thank you to everybody.

I am absolutely committed to the NDIS.

I know change is confronting.

I know that people need to see where they are place as a result of change and I know that it needs to be done through co design and empowerment.

If when the panel do something initially people say, hey, they’ve got to think of this or that, don’t get angry, just let us know.

We’re all in this together.

I know everyone here is equally committed to making the NDIS the best it can be.

We’re all on the same side and I really want to just do everything I can in my power along with this marvellous new leadership team we’re building in the agency, this marvellous panel and, most importantly, people with disability and the people who love them.

We will get this right and we’ll just get on with it.

JEAN COTCHIN:

Thanks, Minister.

Speaking of, you know, saying things to the review team, there’s a couple of different ways for all of you to do that.

It’s all sort of in the process of being built, so, for now, I would encourage people to go to the review’s website and that is ndisreview.gov.au and sign up for updates there.

But also as usual, if people feel more comfortable having a buffer between themselves and the government or for any other reason, Every Australian Counts will continue to ask for your feedback and help provide it back to the review team for you and you can do that right now using the form that we set up a few days ago to send in your questions, just write whatever you want in there, and we’ll keep you updated with other things in future.

But feel free to go back to that.

So that’s available from the home page at www.everyaustraliancounts.com.au.

Thank you all very much for your time, everybody.

I hope that we can do many more things like this in the future.

For now, I will let everyone go.

Yes, but thank you very much.

– End of transcript –

Are the NDIA and their external lawyers being ‘model litigants’? Are they on their best behaviour with you at the AAT?

Every Australian Counts and Disability Advocacy Network of Australia (DANA) have been talking to people from the National Disability Insurance Agency (NDIA) who tell us they want to work with us to help to make things better.

They know that because things have been bad, most people would feel more safe and comfortable talking to us about your experiences with the AAT than them.

So they have asked us if EAC and DANA could work together on a quick project this November, on what Australian governments call model litigant obligations. Model litigant obligations are like a list of rules or principles, about how people representing the government should behave in formal disputes – situations where people are not happy and have to argue against the government, like when you take your NDIS matter up at the Administrative Appeals Tribunal (AAT), for example.

Model litigant rules exist because there is a big power imbalance between Australian citizens and the government if you have to argue with them about things they have or haven’t done. The rules in the most simple terms mean that people representing the government should always be on their very best behaviour, so that things can be as fair for you as possible.

We have heard many, many stories from people who have been to the AAT about the NDIS.

In lots of your stories people with disability and advocates tell us the NDIA have not been acting like ‘model litigants’. In fact, most people have told us they have behaved in really awful ways, making people with disability feel completely terrible, or made them feel like giving up.

We think everyone would be much better off if they did always act like model litigants. So we want to help make sure that starts happening!

But we can only do that with your help.

What will the NDIA do after this?

We think the NDIA want to make their own more detailed list of model litigant obligations, called a Model Litigant Framework. We reckon all of you might like to be involved in the design of something like that – especially if you have been in a dispute with the NDIA before.

We’re going to tell the NDIA and any Ministers involved that they need to give everyone more time and opportunities to make sure you all have the best chance to get involved. But we also hope that by starting the conversation now, every single person representing the NDIA gets the memo about how important it is to lift their game and behave like model litigants.

How can you help?

Could you help us show the NDIA and the government how the NDIA and their private lawyers have behaved with you, or a person with disability that you have supported? And could you tell us what they could and should do differently from now on?

✅ Our survey

To try and make it as easy, secure and quick for you as possible, we have made a new multiple-choice question survey. It’s mostly multiple-choice questions, which we think might make it a bit easier.

The survey doesn’t ask you to tell us anything that would tell us exactly who you are. That means it will be private. We think that might make everyone feel safer or more comfortable about doing the survey.

We won’t tell the NDIA or government about who did the survey – we won’t even know ourselves.

We will only tell them things we learn when we put all the answers together. We might say things like “80% of people from regional areas all agreed with this statement”, or “400 people who’ve been to the AAT all said x was very important to them.”

Check out the survey here (opens Survey Monkey in a new window or tab)

If you know other people who might be interested – this is the link to share with them: https://www.surveymonkey.com/r/ndiaml

Thank you!


🔗 Want to find out more?

🔗 NDIS Operational Guidelines: What’s our role and how can we support you at the Tribunal?

🔗 Special Voices blog: What are the model litigant obligations of the National Disability Insurance Agency in NDIS AAT appeals?

🔗 Joint submission to the Joint Standing Committee on the NDIS – NDIS Appeals at the AAT, Section 2: The NDIA’s Model litigant obligations (PDF)

🔗 Unreasonable and unnecessary harms: Joint submission regarding the NDIS internal review and external appeals processes (PDF)

🔗 QAI: Analysis of NDIS appeals report

🔗 QAI: NDIS Appeals presentation (PDF)

🔗 ABC News: NDIS participants, families and lawyers allege breaches of NDIA’s model litigant obligations

🔎 Do you represent or work for the government? Want to know how to be a model litigant? Great! The Attorney General’s Department has more info and resources on their website, including training.

📜 Legal Services Directions 2017 made under section 55ZF of the Judiciary Act 1903: Appendix B—The Commonwealth’s obligation to act as a model litigant – or use the plus sign below to read the text from Appendix B without leaving this page.


Appendix B—The Commonwealth’s obligation to act as a model litigant

Appendix B—The Commonwealth’s obligation to act as a model litigant

The obligation

1 Consistently with the Attorney‑General’s responsibility for the maintenance of proper standards in litigation, the Commonwealth and Commonwealth agencies are to behave as model litigants in the conduct of litigation.

Nature of the obligation

2 The obligation to act as a model litigant requires that the Commonwealth and Commonwealth agencies act honestly and fairly in handling claims and litigation brought by or against the Commonwealth or a Commonwealth agency by:

(a) dealing with claims promptly and not causing unnecessary delay in the handling of claims and litigation

(aa) making an early assessment of:

(i) the Commonwealth’s prospects of success in legal proceedings that may be brought against the Commonwealth; and

(ii) the Commonwealth’s potential liability in claims against the Commonwealth

(b) paying legitimate claims without litigation, including making partial settlements of claims or interim payments, where it is clear that liability is at least as much as the amount to be paid

(c) acting consistently in the handling of claims and litigation

(d) endeavouring to avoid, prevent and limit the scope of legal proceedings wherever possible, including by giving consideration in all cases to alternative dispute resolution before initiating legal proceedings and by participating in alternative dispute resolution processes where appropriate

(e) where it is not possible to avoid litigation, keeping the costs of litigation to a minimum, including by:

(i) not requiring the other party to prove a matter which the Commonwealth or the agency knows to be true

(ii) not contesting liability if the Commonwealth or the agency knows that the dispute is really about quantum

(iii) monitoring the progress of the litigation and using methods that it considers appropriate to resolve the litigation, including settlement offers, payments into court or alternative dispute resolution, and

(iv) ensuring that arrangements are made so that a person participating in any settlement negotiations on behalf of the Commonwealth or a Commonwealth agency can enter into a settlement of the claim or legal proceedings in the course of the negotiations

(f) not taking advantage of a claimant who lacks the resources to litigate a legitimate claim

(g) not relying on technical defences unless the Commonwealth’s or the agency’s interests would be prejudiced by the failure to comply with a particular requirement

(h) not undertaking and pursuing appeals unless the Commonwealth or the agency believes that it has reasonable prospects for success or the appeal is otherwise justified in the public interest, and

(i) apologising where the Commonwealth or the agency is aware that it or its lawyers have acted wrongfully or improperly.

Note 1: The obligation applies to litigation (including before courts, tribunals, inquiries, and in arbitration and other alternative dispute resolution processes) involving Commonwealth Departments and other Commonwealth agencies, as well as Ministers and officers where the Commonwealth provides a full indemnity in respect of an action for damages brought against them personally. Ensuring compliance with the obligation is primarily the responsibility of the Commonwealth agency which has responsibility for the litigation. In addition, lawyers engaged in such litigation, whether AGS, in‑house or private, will need to act in accordance with the obligation and to assist their client agency to do so.

Note 2: In essence, being a model litigant requires that the Commonwealth and Commonwealth agencies, as parties to litigation, act with complete propriety, fairly and in accordance with the highest professional standards. The expectation that the Commonwealth and Commonwealth agencies will act as a model litigant has been recognised by the Courts. See, for example, Melbourne Steamship Limited v Moorhead (1912) 15 CLR 133 at 342; Kenny v State of South Australia (1987) 46 SASR 268 at 273; Yong Jun Qin v The Minister for Immigration and Ethnic Affairs (1997) 75 FCR 155.

Note 3: The obligation to act as a model litigant may require more than merely acting honestly and in accordance with the law and court rules. It also goes beyond the requirement for lawyers to act in accordance with their ethical obligations.

Note 4: The obligation does not prevent the Commonwealth and Commonwealth agencies from acting firmly and properly to protect their interests. It does not therefore preclude all legitimate steps being taken to pursue claims by the Commonwealth and Commonwealth agencies and testing or defending claims against them. It does not preclude pursuing litigation in order to clarify a significant point of law even if the other party wishes to settle the dispute. The commencement of an appeal may be justified in the public interest where it is necessary to avoid prejudice to the interests of the Commonwealth or a Commonwealth agency pending the receipt or proper consideration of legal advice, provided that a decision whether to continue the appeal is made as soon as practicable. In certain circumstances, it will be appropriate for the Commonwealth to pay costs (for example, for a test case in the public interest.)

Note 5: The obligation does not prevent the Commonwealth from enforcing costs orders or seeking to recover its costs.

Merits review proceedings

3 The obligation to act as a model litigant extends to Commonwealth agencies involved in merits review proceedings.

4 A Commonwealth agency should use its best endeavours to assist the tribunal to make its decision.

Note: The term ‘litigation’ is defined in paragraph 15 of these Directions in terms that encompass merits review before tribunals. There are particular obligations in relation to assisting a tribunal engaged in merits review to arrive at a decision. Commonwealth agencies should pay close attention to the legislation under which a tribunal is established, and any practice directions issued by the tribunal. In the case of the Administrative Appeals Tribunal see in particular subsection 33(1AA) of the Administrative Appeals Tribunal Act 1975.

Alternative dispute resolution

5.1 The Commonwealth or a Commonwealth agency is only to start court proceedings if it has considered other methods of dispute resolution (eg alternative dispute resolution or settlement negotiations).

5.2 When participating in alternative dispute resolution, the Commonwealth and Commonwealth agencies are to ensure that their representatives:

(a) participate fully and effectively, and

(b) subject to paragraph 2 (e) (iv), have authority to settle the matter so as to facilitate appropriate and timely resolution of a dispute.

What’s happening with NDIS AAT appeals? Recap: online forum with NDIS Minister Bill Shorten and NDIA Chief Counsel Matthew Swainson

A few weeks ago Every Australian Counts and our friends from Disability Advocacy Network Australia asked the NDIS Minister Bill Shorten, and the NDIA Chief Counsel Matt Swainson to join us for a conversation with people about fighting for NDIS supports at the Administrative Appeals Tribunal.

We wanted them to tell all of you about what they had been doing about it over the last few months, and find out what they wanted to do next.

And we wanted them to answer any questions you have about all of that – both in the forum but afterwards too.

But more importantly – we wanted them to hear directly from you.

So we held an online forum for people who have been through (or are in) the AAT with NDIS matters. We livestreamed it to Facebook too, and we have set up some feedback forms on our website over here.

If you missed it or want a refresher, you can find the video recordings below. Or if you’d like to read what was said you can keep scrolling down for the (very long) transcript.

Very quickly – what happened?

  • In May 2022 there were 4,501 people with disability with cases against the NDIA at the AAT.
  • At the time of the forum (September 2022) there were about 4,000.
  • The Minister wants to get people out of there as fast as possible, in a way that respects and listens to people with disability, families, and advocates. He doesn’t like the way all of this was going under the old government.
  • He said former Disability Discrimination Commissioner Graeme Innes would be setting up an ‘oversight committee’ soon – for a new ‘alternative dispute resolution’ process for people who are at the AAT right now. Minister Shorten is hoping this committee would find ‘independent expert reviewers’ that would then help 2,000 get sorted with their AAT appeals before Christmas.
  • It would be voluntary – meaning you could change your mind at any time and not loose your spot in the AAT queue.
  • Minister Shorten said there would be a 1800 number for people to call and get help or advice from advocates – and advocates should get more funding because they don’t have enough to help everyone who needs it.
  • The new(ish) Chief Counsel at the NDIA Matt Swainson said he had been meeting with advocates a lot lately, and he was really grateful to hear from you here too.
  • He said the NDIA had looked at every single NDIS AAT case over the last few months. The NDIA had started calling people again about their AAT appeals, but not everyone (and an advocate said they had heard it wasn’t always a good process – it made sometimes made people feel pressured or confused). He said he wants the NDIA to do much better and one way to make that happen was by always listening to all of you.
  • People with disability, family members and advocates asked very thoughtful questions. We will ask the NDIA and Minister for more detailed or updated answers, or give you the chance to ask them again in other online forums.
  • We have set up a new section on our website where you can send us your questions for us to ask people like the NDIA and Minister to answer. Stay tuned for more…

Video

Speaker view – YouTube

This video is a recording of the entire Zoom forum, using Zoom’s ‘speaker view’. That means the video shows the face (or screen) of whoever is speaking, meaning it shows just one person on the screen at a time.

Gallery view – Facebook livestream

This video is what people watching on Facebook saw live. Unfortunately we had some technical problems, so it didn’t start playing until a few minutes after we had already started the Zoom. That means the first few minutes are missing. We’re sorry about that!

This video shows the forum using Zoom’s ‘gallery view’. That means that you can see 20 people all at once in a grid from the first page of the Zoom forum on the screen the whole time. You can see the Auslan interpreters in this version, but they might be hard to follow on a small screen.

Transcript

1 – Welcome, acknowledgements, housekeeping, accessibility, and tech support

Jean Cotchin, Every Australian Counts

Hello, everybody. We will wait a few moments for everybody to come out of the waiting room into the meeting. We won’t be very long. Thank you. We have almost 100 people with us now.

Thank you, all, for being here. We’re really appreciating your generosity, as always for being part of our wonderful community and helping to shape the future of the NDIS.

Before we get started I would like to acknowledge the traditional owners of the lands on which we are all meeting, I am coming to you this morning from Wurundjeri land and I’d like to pay my respects to Elders, past and present and acknowledge any First Nations people we have in the Zoom or in the livestream or in the pre-recorded video.

I want to acknowledge all the people with disability, family members and workers and advocates who have come before us and done a lot of hard work to get us to this point. Thank you.

Before I introduce our guests, I will run through a few housekeeping things. Because this is set up a bit differently to the way we would normally do things, we have a Zoom forum with 100 or so people, and we’ve asked for the Zoom forum people to primarily be people with disability, family members and/or advocates or other supporters who have been through the AAT process themselves in some way.

Because we don’t want anyone to miss out, we have limited the number of people so that you people in the Zoom get a decent chance of having a say. We also have people tuning in from Facebook and YouTube. We may have been having some technical problems with one of them, hopefully it’s resolved.

For all of us in the Zoom, we appreciate you having your cameras on if you are comfortable with that. Because it is public in the sense that people in the livestreams are able to watch, it means anybody is able to watch. We have reason to believe there may be some media watching, it could be anybody. If you are not comfortable with that, for any reason, that is fine, you can turn your camera off or change your name, use an alias – whatever you feel comfortable with.

In addition to that, we have got Chelsea and her colleague, Auslan interpreters, who will be taking it in turns to interpret – and I have just reminded myself I am probably speaking too quickly. I will take it a bit more easily.

We also have live captioning. If you are in the Zoom, you can click the CC button at the bottom to bring it up, and we will post a link in the chat shortly, which you can click to open the transcript in a browser window, which some people find easier.

That brings me to my next point, Sophie, technical support today, for those in the Zoom, you can send her private messages if you need, if you are having problems with the tech. It is quite a large group, defaulted so everyone except for our guests are not able to use the microphone. But we want to hear from you all. Or as many as possible. When we get to that point, our tech support people will weave their magic and click a button that allows you to come off mute, but you will have to respond by accepting it or not. It’s a bit tricky. But it makes life easier for interpreters and captioners.

I think that’s everything re housekeeping.

2 – About this forum

Jean

The reason we are here is because, as you know the last few years – particularly the last 12 months – have been really difficult. We’ve seen record numbers of people with disability having to go to the AAT to do external appeals to get things sorted out.

It’s been really hard, and everybody in our community has been really wonderful and supporting each other where they can, so that we can make sure this is an issue we can get sorted out. And thankfully, we have a new Minister for the NDIS now, Bill Shorten, thank you, and a new Chief Counsel at the NDIA, Matt Swainson. Matt has been there for a few months.

I’ve been having some conversations with both the Minister and Matt and people in their teams, and so have some other groups, but we decided it was a good idea to open the conversation up to all of you. Thank you for being here. We hope that today is a new beginning for the way that our community works with the NDIA and the Minister for the NDIS. I appreciate Matt and Minister Shorten taking a leap of faith here and joining us to hear from you about what is important.

A quick outline of what you can expect from today… first up we will do a mood check, we have a tool called Civility and we will use that at three points throughout the forum. It will help us – especially the visual learners amongst us – to get a sense of how people are feeling, what matters and what’s important, and what we want to see change.

I want to also, and I will remind you all throughout the forum, this is not our only opportunity to give feedback and be heard. We have more stuff on the website and we are hoping this is just the beginning of a larger conversation. We will begin with a mood check and then we will hear from Minister Shorten. And then we will hear from Chief Counsel Matthew Swainson and we will have a chance to have questions from the audience. We will follow up with other things you think are important for the Minister and the NDIA to hear, particularly around what you would like to see change with the appeals system and in response to what we are about to hear from them both.

We may not be able to give you all the answers today, the Minister and Matt won’t be able to give us all the answers, but we will do our best to do as much as we can, we will collect everything and follow up with them afterwards as well.

It’s going to be tricky for them to address, or make promises about individual cases at this point. I think one of the more powerful things we can use this moment together for is to make it easier for the people who are making decisions, not just the two of them, others too, who are tuning in, to see how some of these issues that affect you as individuals are systemic. That is, they affect lots of people in similar ways and if we can address the root causes and problems for you and other people, hopefully that will make a significant difference.

3 – Mood check

Jean

Alright, moving on, it would be good to hear how you are feeling now about how things have been for you with the appeals process. Sophie is going to pop a link in the chat which will take you to a tool called Civility, it’s a bit like menti.com. If anyone has used that before. This will let us get a sense of how people are feeling right now. Sophie, there we go. This might not work for everybody, you don’t have to do it if you don’t want to. But we will, we have tested it for accessibility, you can ask Sophie if you have problems, ask her in the chat.

What we have now and the screen is this QR Code, so go to WW W.menti.com, and go — enter the code, ‘6169702’. This is also a QR Code which means you can get your smart phone come out and if you just hover over the QR Code it will bring a linkup which allows you to open it. Once you have opened it, there is a button with a love heart on it. If you hit that, it allows us to see how many people have joined in and I can see that we now have 70 or so, increasing. And the next option, Sophie, will bring up the question for the new check. Here we go.

After you have pressed the love button…what one word would you use to describe the NDIS appeals process?

I think I can have some guesses about people’s words to describe how they feel about the AAT appeals process and what you have thought about that. We will read out the answers and they will come on the screen. Is that right, Sophie? There we go.

So we have a word cloud on the screen now. The biggest word by far is frustrating. Followed by traumatising, dramatic, complex, exhausting, difficult, disgraceful, soul-destroying, unnecessary, confusing, and inaccessible.

There are many more. We will share the results of this and it more thoroughly afterwards. But I think that helps us show how this has made people feel. And if anyone else is in doubt.

Hopefully, that is the end of that now. Thank you.

You can also pop your answers into the chat, as well. We would appreciate that also. Thank you, all.

That is a bit of a tricky one for the Minister to follow. Not that he is unaware. Minister Shorten joined us at the rally that we held before the election, which we are really grateful for. So thank you, Minister, for always listening to our community and being here today. I will let you address the community, thank you.

4 – Statement from the Minister

Bill Shorten, Minister for the NDIS

Thank you. I would like to acknowledge that wherever you are in Australia, for this session, you are on Aboriginal land. Always was, always will be. But I pay my respects to elders past, present and emerging.

I think we need to be truthful here.

I think the Agency and I am now the Minister for the agency and we must acknowledge that the internal review process, is unaccountable, the AAT Process is complex, and in most cases broken.

Under the previous Liberal government, a number of participants were seeking external reviews and that increased by 400%. It appeals to a number of participants and that has more than doubled.

Since being elected, my office is inundated with people experiencing problems. I think under the previous Ministers there were about 250 matters a month that politicians would get in that office. We are at 1,250 a month.

After the election in May of this year, the end of May, there were 4,501 active cases in the AAT.

I committed before the election to take this clear problem and I pledged that we would have an alternative dispute mechanism to make the appeals process better for people with disability.

I am here today to ask you and hear from you about the weight of this commitment, and I acknowledge Chief Counsel Matt Swainson is here, and I want to reveal the real problems with the review for the NDIS processes.

We are here to listen and to gather the most (inaudible) ideas and your feedback will help shape a trial pilot to trial a model for dispute resolution.

I am determined to put people with a disability back at the centre of the NDIS.

The conversation today is a small part of Labor’s commitment to this consultation.

I think this consultation and the ongoing dialogue I want to have with you about the best way to do — address the AAT is this. I want to rebuild trust and work together with these problems.

I acknowledge the NDIS efforts in recent months particularly since the election has been (inaudible) to improve the appeals backlog. The shift has reduced the overall caseload by about 10%. It is just under 4,000 active cases as of 19 September. From 4 1/2 thousand.

I get that sometimes there will be disagreements in the scheme. But in my opinion, especially in recent years, the scheme was being managed not by sensible planning decisions or internal review, but rather by reference to the AAT. And I think it is a terrible way to manage the scheme.

I am deeply conscious that one way to help resolve the series of cases is to have a better initial planning process. And also to have more transparent internal review. And for the agency to provide written reasons rather than a way to (inaudible).

I want to make sure that the Model Litigant Rules apply in all cases and I think there has been an overuse of external lawyers which has created an unfair David and Goliath sort of struggle.

It is clear to me that we need to improve future processes. As part of that, we must deal with the legacy cases with people right now under the AAT.

I am interested in the things that participants know and need for a clearer and more efficient process, but we need a circuit breaker to consider individual participant cases.

So I am interested to understand how long it should take to get an outcome. I am sure there will be a lot of items here about how the NDIA can do things better. But also what kind of support I needed to navigate this process. I appreciate Jean and every Australian Counts and any new processes for internal dispute resolution in the future must have continued scrutiny and that is to be conditional advocacy support when trialling things with these advocacy cases.

So one, we want to set up an oversight committee to help the existing cases. The oversight committee has got to be trusting people with disability in that sector. Advocates, I am pleased to announce that this will be chaired by Graeme [Innes], Australia’s former Disability Discrimination Commissioner.

They are going to do, is the oversight committee, once it is created, those members will appoint expert reviewers. These are independent reviewers from the Agency, to which there are thousands of cases of the AAT.

To be very clear. This is a voluntary process. No one loses their place in the queue.

Now participating in the review of the matter does not mean they have to accept what the reviewer says. This is an entirely voluntary extra effort to try and cut the bullshit and just get on with the issues.

We’ll be consulting with people with disability and their experts at every stage.

If that works you want to get to 2,000 matters which are currently on the waiting lists before Christmas, although I would love to see everyone’s matter looked at as soon as possible.

And I am of the view that many of these matters with participants were arguing things can and should be fixed and they should not require a participant to have to (inaudible) all the way to the door of the court.

I think the current situation is repellent and repugnant and it is not acceptable for this government or any government to behave in this way.

Someone would lose their place in the queue by this additional process? No one. I get that a lot of people would have an aversion to this question, but the NDIA has been stumbling around with it for a long time. I’m sick of getting reports, it is costing a lot of participants suffering.

What is going to change? I want the bad old days dispensed with, I want to knock off and resolve thousands of these matters and by that I mean resolve in the interests of the participant. There will be proper supports with an oversight committee.

I just want to make very clear on behalf of participants, as far as I’m concerned, I say this clearly to the NDIA, (inaudible) adversarial approach is not the approach which I support.

As Minister, I want the process to change so that participants experience a much better, much better respect than they currently have.

With that sort of introduction, I also want to make it clear that when people, if we have this alternative review process, it is without prejudice, people don’t have to do it, they don’t have to accept it. If they’ve got questions though, there will be a 1800 number which will be supported by advocates, advocates will then be involved in helping provide resources and reports, and ultimately if an offer is made by an expert reviewer, then the participant should have the right to be able to get some agreed legal support just to assess this.

And I now want to hand over to Matt, and acknowledge that Matt has got things moving since he has been Chief Counsel. So I would ask you to listen to him with an open mind. It is not more of the same business as usual. Over to you, Matt. Thank you.

Jean

I will just introduce Matt, if I could jump in. Matt is the new Chief Counsel at the NDIA. And I have been fortunate enough to be part of a number of meetings that Matt has been in with a number of appeals advocates.

I have been really pleased to see how sincere he is about listening. So I hope that Matt is able to set a good example for the future of the NDIA and everybody else that works with him and alongside him. So with that, I will hand over. Thanks, Matt.

5 – Statement from the NDIA

Matthew Swainson, NDIA Chief Counsel

Thanks, Jean, and thanks, Minister. Good afternoon, everybody. I want to start my first acknowledging that I’m coming to you from Ngunnawal land, in Canberra, and pay my respects to elders past, present and emerging. From this land and also the other Countries where you’re coming from this afternoon.

I have quite recently been made Chief Counsel in the last three months and in that time I spent a fair bit of time speaking to people and listening to what other pressures in the system. As people have been very generous with their time and I appreciate the time people have taken to help me understand and help the Agency to understand.

I think what is quite clear is that we need to listen to the experience of participants. Who have been through the process or who are within the AAT at the moment.

I just want to acknowledge that I expect that many people who are calling in today within the Zoom, within the meeting, have had very terrible experiences.

I expect that I am going to be hearing something which is quite confronting and I am quite nervous about this today because I do acknowledge the experiences that people have had. And I have heard that, I have heard that coming through.

But I feel it really is incumbent on us to listen directly from participants and to hear those experiences and to learn from them. I appreciate that people have questions today. I will do my best to answer those questions when I can. I will try to give as honest and as as I can, some questions, however, I won’t be able to answer all of them.

I think one of the things mentioned at the start, and I don’t anticipate this to be the only time that we come and talk to people and listen, the Minister mentioned our obligations which are very important and our obligations on the government. I think part of those obligations are to listen to people. That is something that we have been working on. What is the best way to do that. So this will not be the only time that we want to hear from people, so there are some questions I may have to come back to people on.

So there has been a fair bit of focus on numbers. Minister Shorten mentioned some numbers and yesterday the caseload has reduced since May. And I think that is good. It is encouraging.

I want to acknowledge that each of those numbers is a person. If you are being in the AAT, it doesn’t help the caseloads come down.

I acknowledge there are things I’ve seen we need to work on as the Agency, we have things in play and in train that we are hopeful will make a difference.

Minister Shorten did mention the expert review process, we are hoping to consult with people. Setting up the oversight committee for that is a big part, we have to make sure there is an arm’s-length, a body at arms length from the Agency to make sure whatever was set up with independent, that is work that Graeme Innes will be leading and I thank him for putting his hand up for that work.

He will be leading some consultation on what that process looks like for people. That is not settled yet. One of the things we have heard from people is that participants and their advocates or representatives want to hear from an Agency staff member, not a lawyer. We do have lawyers in the system, they help us make sure cases are progressed as quickly as possible, we don’t want people to be delayed.

But we have heard people want to speak to an Agency staff member and we have been rolling that out, getting Agency staff members to lean in to contact participants to talk about their case. That is one thing we have progressed in recent months and we are getting good feedback on that.

As I said, I am here to listen today, answer questions where I can. There is pretty broad acknowledgement that we need to look at what we are doing and how we are running things, and putting the participant back at the centre of external review.

There is a statutory system, there will be times when you disagree with decisions and you need to be able to go to an external body to question decisions. That is your right.

I will hand back to you, Jean. Thank you, everybody, I appreciate your time this afternoon.

For those who share this afternoon, I want to acknowledge your courage, it is confronting. Thank you for your time.

Jean

Thank you, Matt. Thank you for making it clear that both yourself and Minister Shorten are personally committed to listening. We will hold you to that, don’t worry.

6 – Questions and Answers

For now, we don’t have much time, I will put somebody on the spot right now and ask if Bob Buckley is happy to ask the question you put in the chat. I have clicked a button that will let you unmute.

Bob

My first question was – if there is an alternative process, does it actually stop you? Does it slow down the AAT process? If you go to the alternative process, is your AAT process held up? Or do the two proceed in parallel?

Jean

OK, I will ask the Minister to respond.

Minister Shorten

Matt is in charge of the legal detail, but the principle I have is the alternative process should not delay the AAT. It’s like a train track, it is concurrent.

Secondly, I am hoping in this pile of work that the review of a matter done by someone independent of the Agency, either cited by Graeme Innes’s committee will take no longer than a month. This is an additional offer and am trying to organise Agency and government resorts is to resolve matters rather than have a fight.

It doesn’t affect anybody’s legal standing, they don’t have to take the offers.

I personally believe we have a more conciliatory, less adversarial approach, independent experts who understand disability with the aim to fix it, not fight it.

I hope that answers your question, Bob.

Jean

Thank you, Minister. Over to Nick Avery.

Nick

My question is around the NDIA Operational Guidelines. They were changed around the NDIS internal review processes in September or October last year – to remove the requirement for the internal review team to speak to the participant – and that has resulted in a lot of harmful decisions because the participant was left out of the decision-making process.

Will those Operational Guidelines be changed back? And if so, how soon? Because it is causing harm now.

Minister Shorten

It is the Minister here, I blew the whistle on that with advocates last year, the idea where you have an internal review where you don’t speak to the person is a bit like having a bus coming that doesn’t pick up passengers. What is the latest on that, Matt?

Matt Swainson

As I mentioned, it’s a key piece of feedback we have heard around the need for Agency staff to contact people. We’ve been doing it in the AAT program, something that is well-received.

The question goes to internal review – I’m not able to talk about the change in Operational Guidelines – I will have to come back to a future session after taking it on notice.

I know the internal review team are increasing contact with participants through the internal review process. That is certainly something coming back, it is happening at the moment, not in every single internal review but it is something that is coming back. I hear your comment, I don’t know if it would lead to a change in the Operational Guidelines, but I know there is contact coming back for internal review people.

Jean

Thank you. Some of these are going to be ongoing conversations. Next up, I think we will go to Kayla.

Kayla

I am a disability with an advocate’s rights service in Adelaide. Matt, when you were talking about the new process you been trialling over the last few months in terms of having NDIS representatives contact participants directly, making sure how we are safeguarding around that?

Something we’ve heard from our clients is they have been contacted directly by NDIS representatives, asking them to settle – not giving them an opportunity to discuss their new plan, what it would look like with an advocate, for example. Maybe feeling a bit pressured. That would happen without the knowledge of an advocate or an NDIA lawyer, as an advocacy service we are completely on board with not wanting to have so many external lawyers as well, and spending that money on the NDIS and plans instead.

My question is – how are you going to safeguard to make sure participants’ rights are still protected while giving them an efficient process through the trial you have been doing?

Matt Swainson

Thanks for the question. I don’t think we would call it a trial, we want to do it ongoing. It’s clear feedback we’ve had that people want to speak to Agency staff members and not external lawyers. It is something we will keep going with. The expectation from me is a participant should be contacted through their preferred method or what is most suitable for them, if they have an advocate, that’s where the contract should be.

There shouldn’t be timeframes around the offer. Resolving a matter means putting an offer. In some cases that will be everything the participant has looked for and in other cases it won’t.

I think there are two things I would like to commit to, and you can hold me to it in future sessions. If there is an advocate involved we should go with the advocate, and we shouldn’t give timeframes for participants to consider offers.

The tribunal may be pushing us with their timeframes, that could be a factor we have to think about. There could be other reasons we want to get things moving along but as a general principle, both of those should stand. Does that answer your question?

Kayla

Yes, that’s OK, I will feed that back into our service.

Matt

If it’s not happening, we should hear about it. It is participant-centred arrangements.

Jean

Thank you. The next question is from Ange Horton. And then I will ask the Minister or Matt which of you would like to take the question. We will wait to hear what it is first.

Ange

My question was around the alternative review place has is to blitz the numbers at the AAT at the moment or is this going to be an ongoing thing?

Minister Shorten

Initially it is to reduce the existing caseload because they are the people under the most pressure.

But the other piece of work is to develop and use the experience of this to have alternative dispute resolution.

We have three things we want to do – I want to bring a lot more planning decisions in-house, I want planners to talk directly to people they are building plans for, when the plan is built and we are reviewing it, I want to seek continuity between the family and the participant and the person who built the plan.

If there then becomes a problem and the plan is not what people look for, there is internal review but I want to give alternative dispute resolution ? This is my early thoughts, not the final decision of the Agency. When someone is unhappy with the internal review, the participant can have an advocate present, but I don’t want the Agency to lawyer up.

The focus has to be on a solution, not legal attrition that wears down the participant into accepting something they don’t really want. And without the cost of going to the AAT. There will still be external reviews, but I would like a better alternative dispute resolution – not playing games and multiple hearings at the AAT and then an offer…and if you’ve lasted 1.5 years, some of these matters are too urgent to take this long.

Jean

Thank you, Minister. A question from Sarah Butler. We’llry to be quick and we will move on to the next section, thank you.

Sarah

Hello, everyone. Hello, Minister.

What changes are being made so participants don’t have to go backwards and forwards to the AAT to get decisions overturned for their supports if something is already being funded?

How can we ensure it is funded in the participant’s current, subsequent and future plans without them having to be told by the NDIA to go back to the AAT again to get the same decision overturned?

Thanks, Sarah.

Sarah

Thank you.

Jean

Should we give that one to you, Minister, or Matt? We hear this one a lot. Why do people have to go back and fight for something that they have already done previously?

Matt

As a general principle, and we’re talking generics – we have looked at this issue that we have disputed, and made a ruling on the information that this should be the position. And I think we only have about seven, 298% of matters and we have looked at that evidence and we know that that supports what participants are asking for is a general principle and we shouldn’t have to go back and ask that same thing again.

I guess the circumstances we are talking about if circumstances change, that might mean that something is different. But I agree with the general principle that once we have agreed to something, we have looked at the evidence and we agree that that’s the way it should be, that should stay.

Minister

Bill here, we have to look forward to that whilst every person is unique and individual, there are issues which are generic. And where there is a standard set, those decisions at some point need to be published or the guidelines need to be a lot clearer so that people aren’t having to reargue over things which, of course everyone is different but some things are commonsense and are common claims. I think the existence of clear guidelines and previous decisions makes it easier for planners, participants, advocates just to know what’s in the swim lanes.

Jean

Thank you, Minister. And Matt.

Michelle is here today who many of you will be familiar with her son’s case. We will get to you in a little bit, Michelle.

The questions coming through in the chat are really thoughtful and smart and I’m sorry that we can’t get through them all today. But I will ask somebody from our team to properly can the chat. We have set up a new section on the website, we have just published. This is for later, but just in case you want to open them up for later, for anything that we can’t address today or that you want us to follow up on later with the Minister and or the Agency, whoever is appropriate, we will do our best to use everything that you have given up today in addition to everything that we have heard in the past, and make a Frequently Asked Questions page, and hopefully that will help make all of this clearer for all of us and make it a bit sort of clear to the Agency as well what matters to you all the most.

But right now, I’m going to ask if you wouldn’t mind using this Civility tool again and this will help us give us a quick overview. An overview of what we have just heard from the Minister. So I think Sophie is going to put that into the chat now. Or if you still have the link open from last time.

Here you go. The link for anybody you can’t click it in the chat is menti.com/ALJ …

There we go. It is up on the screen. Forget about the/bit. So enter the code 6169702 or use the QR Code with your smartphone camera.

We have 121 people in there now ready to go. And I didn’t press it, so I haven’t got it? Sophie, can you remind me what the question says?

There we go. On the screen right now, we have a series of answers to the question, ‘How do you feel about the proposed changes you’ve heard today?

Cautious, optimistic, concerned, hopeful, sounds good but actions speak louder than words…positive but sceptical. Tentatively positive.

I’m going too fast but it feels like the overall sort of sentiment is hopeful, sceptical, and somewhere in between. Which I understand. Exactly why people are feeling cautious. Because we have all been burnt. So great news, sounds hopeful. OK, we will share the details in full with you afterwards and we will also make sure that anybody who missed out on that can do it again later. Thank you, Sophie.

We will move on to the next part of hearing from all of you.

It would be good if we could shift the focus a little bit now to what sort of, what do you all think is important for the people making decisions to consider? And any sort of changes going forward to the AAT Process. More broadly or more specifically the external review process the Minister described.

Again, we will ask people to keep their questions coming in through the chat but also now is a really good moment for you to share anything that you think is really important and helpful that might prevent problems further down the track.

Let’s start with Michelle, who I promised to get back to earlier. Michelle. There you go.

Michelle

Hello, everyone. For those of you who don’t know me, I actually took the NDIA to Federal Court, with a decision to be made about how Reasonable and Necessary is read in the legislation.

My question I guess mainly is to (inaudible) because Bill Shorten is very knowledgeable around this federal decision.

My concern is that too many applicants are having to go to the AAT because the NDIA as an Agency is not using that Federal Court decision. The number of AAT matters that have been decided referencing my case, which shows that it needs to be used, sooner rather than later. It could avoid the whole backlog that is happening at the AAT if the NDIA applied it correctly.

I have had to actually inform staff at the NDIA individually that the decision exists. I got hold of the end of last year that an AAT decision does not last forever, and I’ve had to actually send the staff members on more than one occasion the link. So the staff in the Agency aren’t being informed of the legislation and how it is supposed to be read. The problem is always going to be broken.

How are you looking at addressing the training of the staff to make sure that in-house the decisions are being made correctly and by the right guidelines? Thank you.

Matt

Thanks, Michelle. Obviously appreciate the effort it takes to run a matter right through to that sort of appeal point.

I think training is a really big piece of the puzzle. We are pretty committed from the legal space to the incrementing for the training and decision-making. And I think it is really important. I agree with you, I acknowledge that and I think we are committed to doing that. And that’s really important.

I think one of the other things I think the Agency is putting a lot of effort into is publishing guidance to sort of assist with that interpretation or the way in which reasonable and necessary is applied. I hear that decision of the Federal Court, and I am aware of that. It is still quite a complex process to make that decision and I think the operational guidance and a lot of work the Agency has been doing in putting out guidance to assist participants and also to advocate people to understand how the agency is applying that I think is helpful.

I think training is probably the key to it. I agree. We are committed to rolling up more training.

Jean

Excellent question, thanks Michelle.

I have made a mistake and gone a bit over time. My apologies, and thank you all for your grace with my first attempt at emceeing something big like this. I’m not really too afraid to admit I am a bit nervous. So luckily we have an excellent community doing this.

We only have four minutes left, I will invite the Minister now to reflect on what was said from all of you today and then we will try and get wrapped up by 2:30. Thank you.

Minister Shorten

Hey, thanks, very much Jean. And thanks very much, Matt. And thanks to everyone participating. I also acknowledge the captioners and the Auslan interpreters the work they’re doing and tech support.

I think people have been let down by the NDIA for a number of years, my predecessors. So we have to be truthful about that. I know people want everything changed immediately, and there is a fair bit of trauma and pain. I can’t change everything immediately. I can promise you that working with you, this is to do with legacy cases and is to deal with one part of the system but ideally I want to help build trust with everything else.

I also recognise that the best way to avoid this is to have a better initial planning process, to have a weight of transparency and what you can and can’t claim, to better train up the planners and internal reviewers about what has happened before so that we are not constantly reinventing the wheel.

And I’m very committed to having an internal resolution process or internal mediation and I have asked Graeme, in the Oversight Committee, to prepare not just what we are doing on the current cases, what the alternative dispute resolution might look like by early December.

That will be robust, and I want to take the lawyers, the agency’s lawyers out of that alternative dispute resolution because it is an unfair contest.

I want the Agency to run down the reasons why they reached a decision rather than constantly, in my opinion, too often delaying the facts that people are (inaudible) and don’t even know why.

Thank you for all those solutions coming through in the chat. It is very good. I just need to be very clear. The only way that this can work or alternatively, by properly funding advocacy. I were making sure there is more advocacy resources and the approach to trust building, a level operation to the participant feels empowered and resourced to understand and make a decision and not be coerced into making a decision.

What we have said today changes the existing rights of anyone, and as a general effort to deal with anything we have put in that too-hard basket with you.

I will stop at that point because I know Jean will probably want to say something on that.

Jean

Thanks, Minister. My apologies. I have made us go over time. I think it is clear that there is a lot more to talk about, but I really appreciate your presence here today, everybody. And I apologise most sincerely to everybody that would have liked to have been a part of this but wasn’t able to. And I promise you that we will do everything in our power to make sure that this is inclusive for everyone. Going forward. But we are at 2:30 now, and I know a lot of people have places to be. And things to do.

We were hoping to do one more mood check to compare with how people were feeling at the start of the session, so if you need to rush off —

So we’ll follow up with links after this of all of the links that we share today and we will be back in touch really soon. Make sure you are signed up to the Every Australian Counts mailing list Iif you aren’t already. So that we can keep you in the loop.

But right now, up on the screen, 73% of people also are in the Civility tool. And I can see those graphs on the screen in response to the question, ‘how have you found the session?’ ‘I feel I know more now’ is sort of halfway between, a little bit closer to, roughly halfway between strongly disagree and strongly agree. It is sort of, 23 people have said strongly disagree, six ticked something right in the middle there.

Roughly in the middle, people said ‘I feel included in this process’. 28 people, roughly halfway between strongly disagree and agree again. And said they feel included in this process. It looks like we have much more work to do. ‘I feel more hopeful’ has similar results more towards strongly disagree but largely in the middle at 2.6.

Thank you all for being honest with us, there is a lot of hardship people have experienced, and I hope and I’m sure you do too that it wasn’t for nothing – we can use this to build a brighter future for everyone who needs support from the NDIS and or other systems.

I will let you go. Thank you all most sincerely. Please feel free to stay engaged so we can keep this going. Cheers, thank you all.

Matt

Thanks, Jean, thanks to the team, really appreciate it.

NDIS Minister Bill Shorten’s announcement on the new NDIA CEO, Board Chair and Board Members

Here’s a very quick summary for now, but check back in later for more information.

Who was announced for leadership positions at the National Disability Insurance Agency?

📌 New NDIA Board Chair

  • Kurt Fearnley AO

📌 New NDIA Board Members

  • Dr Graeme Innes AM
  • Ms Maryanne Diamond AO
  • Dr Denis Napthine AO

📌 New NDIA CEO

  • Rebecca Falkingham PSM

Congratulations Kurt, Graeme, Maryanne, Denis, and Rebecca! We look forward to helping you turn things around for the next era of our NDIS. We’ll be right here working hard to make it easier for you all to hear from and speak to our huge community of people with disability, families, and all who support us. Welcome!


ABC News transcript

Did you miss the press conference on ABC News? We’ll try and get the video to share here, but if we can’t you can still read the transcript below. The transcript has some mistakes in it, but it is close to what the TV captions read.

Ros Childs, ABC News:

We take you live to Canberra where the Minister for the National Disability Insurance Scheme, Bill Shorten, is speaking.

NDIS Minister Bill Shorten MP:

… appointing Mr Kurt Fearnley as the new chair of the National Disability Insurance Scheme.

Along with Kurt Fearnley, I’m really pleased that we’re announcing Mr Graham Innes, Ms Marie Diamond and Dr Dennis Napthine as Directors.

I’m pleased to announce after an open recruitment process, Ms Rebecca Falkington has been selected as the new CEO.

Kurt Fearnley needs little introduction to Australians. They have watched him on TV as a magnificent Paralympian. I first met him at the Beijing Paralympics. I have to say I got to meet him again in 2009 when he was due to attend an event where I was the junior minister. Unfortunately, Jetstar wouldn’t let him take his own wheelchair on the plane. Kurt was a formidable advocate on that day. He stands up for Australians. His contribution in the disability sector, the sporting sector, and his general leadership and advocacy in our community makes him an exceptionally qualified new Chair of the National Disability Insurance Scheme. This is the first time a person with disability has actually been appointed to Chair of the National Disability Insurance Scheme.

I’m also pleased to announce that with Graham Innes, a former human rights commissioner, Chancellor of CQU, and Ms Mary Anne Diamond, we now have five of the directors and chair that are people with disability, the highest number the scheme’s ever had.

I’m also pleased that Denis Napthine, after I asked him to step down as Chair, so then I could put in Kurt Fearnley, I did feel that Denis Napthine had much to contribute, so I’m pleased he accepted my invitation to come back on the board as a director. I also acknowledge in all of this that the work of the acting chair, Jim Minto, it’s been excellent work and we’ve been very busy in the time since getting elected and therefore I acknowledge his work and that of the acting CEO, Ms Lisa Studderdt.

As a result of the recruitment process run by the Board with the assistance of the Australian Public Service Commission and the Department of Social Services, I’m pleased to say that Ms Rebecca Falkingham was the stand-out candidate. The new positions will take effect from 17 October.”

This is an opportunity for the National Disability Insurance Scheme to have reinvigorated leadership following the change of government in May. The process to get such a qualified and competent leadership coming in to the scheme is very exciting and I think we’ll see results in terms of better rebuilding of trust between people — between people on the scheme and the scheme itself. But Australians and Australian taxpayers will be confident the scheme will be returning to its original objectives of providing greater choice and control and value for money for the scheme’s commitments. I might just now briefly ask Kurt Fearnley to say some words and we’re happy to take questions. Other to you, Kurt.

Kurt Fearnley:

Thank you, Minister. I might be hiding behind the fluffy mikes if we don’t sort that out. Thanks, mate.

Well, I am – I’m really excited to take on his role. I think it’s important that the participants of the NDIS get to see themselves in this organisation and trust with the organisation itself is – is a visceral thing. The scheme cannot be a success without trust and that is built over a period of time.

I – it’s been eight years since I was an independent advisor throughout the rollout. And being a part of the conversation of lobbying to get the NDIA, the hope within the community of what it would mean to people with disabilities is still there.

It’s felt – that’s one thing I do know about the community of people with disabilities, they are filled with hope. The scheme itself – I can’t wait to get to know the people within the organisation. To get to know those that are building the NDIA, it’s an honour the Minister would see me fit to take on this role. And I can’t wait to join the Board with, well, with two other voices behind me, of people with disabilities, who have another fresh take on what this organisation can be.

I started in governance roles in 2006. I got a phone call from the Dean of my university who took a risk on a young teacher, just leaving university, to introducing me to the privilege and also the responsibility when you enter into these roles. It’s been 16 years of working various capacities, director roles, advisory committees, but the single greatest role that I have ever even considered is the one that is right here today.

To potentially see people with disabilities look at the scheme and see themselves as Chair, as a chunk of the Board, I think that’s an exciting time.

I look forward to working with the executive, with Rebecca, and the Board already, and with the Minister, to make sure the NDIA continues to be what we lobbied for all along.

A purveyor of disability rights, which are human rights, and also to have that conversation that is more than the single line item about how much good that this can do to the country and it’s not – it’s not a matter of if this is a success, we need the NDIA to be a success for the country to be what we believe it is.

I’m excited again. This is not even day one. This is the first – 17 days, 20 days until it starts? But… I can’t wait for day one and I, like I said, I’m really looking forward to getting to know the organisation again. It’s so different than when I left it.

But the hope, I think that I had, while we were lobbying for it, the hope I had as an independent advisor, is still there. It hasn’t changed. The country needs an NDIS that’s trusted, that is efficient, that is effective, and I hope that I can play a part in that.

Have I spoken too long?

Minister Shorten:

No. You’re going to get lots of opportunities. Are there any questions for Kurt, myself, any other members?

Journalist:

Do you mind if I ask, are you an NDIS participant yourself, if so, do you mind me asking what’s your experience with the scheme?

Kurt Fearnley:

It’s a complicated answer. I am not a participant myself. I remember having conversations with the late Stella Young and we went back and forth about the life I live is a great life. And the need for services that the NDIS provided, I wanted to be able to advocate for it from the other side of the scheme.

Actually, I regret that choice. I wish I was a member of the scheme. I do have family within the scheme that I won’t elaborate on too much because that’s their story. But, as of today, no, I’m not a member – personally, I’m not a member of the scheme. That’s the thing about disability – there are so many – so many stories around disability that will not be members of the scheme. Will not be participants of the scheme.

We don’t – we aren’t a cover-all for disability, disability is complex and disability is varied and disability has many, many stories to tell. I have worked in the organisation as the independent – on the Independent Advisory Council and I have worked on the governing board of a service provider for the last two years as well. But not a participant.

Journalist:

Kurt, you used the phrase trust, I think the Minister used it as well. There’s a sense that under the previous government the disability community had lost trust and faith in the NDIA. In your new position, how do you go about rebuilding that trust and do you think that trust broke under the previous administration?

Kurt Fearnley:

I won’t make comment on the previous administration. I will make comment that… Trust is critical for the scheme to succeed. Trust allows people to take risks. Risks is where there’s opportunity. But also this is – the relationship between a participant and the scheme is something that is so important and so – it is allowing them to be them. I will do everything within my power to engage with the people who I have fought alongside, who I have engaged with, for the last decade, when it came to the advocacy of the scheme.

We’re also bringing not just my voice, but we’re also bringing Marianne and Graham, who bring a depth of experience to the organisation at the board level, whether it be their advocacy role, or Marianne’s experience of working within the NDIS itself.

Over the last couple of years I – I always missed – I always wanted to hear one thing and that is hearing people from this position talk to people with disabilities and say you’re worth it. That everything this – all the bumps and bruises and all the fights and all the hard yards that they are doing, as advocates for themselves and their families, but also – this organisation can be what we believe – can be what we believe it to be.

For now, I just need to take a breath. Get to know the organisation. And to, I guess, with the guys behind me and also Rebecca, sit down and really understand where we’re at and bring with us our hopes of where it can go to.

Journalist:

Mr Shorten, Mitchry lawyers are proposing a class action against the Commonwealth, challenging the exclusion of applicants aged 65 and over to the NDIS. Can you respond to the suggestion that the age barrier is discriminatory, and Mr Innes, do you think more needs to be done to lift the quality of disability support to seniors to an NDIS standard?

Minister Shorten:

We haven’t seen the details of the proposed class action so I cannot comment specifically on that.

In terms of the issue that we have, the NDIS for people up to 65, and then a different scheme, aged care, for those over 65. There’s people in the community who say that the quality of disability care after the age of 65 is inferior to the quality of disability care before 65. I think they have a point. The NDIS was originally set up between 2010 and 2013 to fill what was a gap at that time. As we were campaigning to create the NDIS from 2007 onwards, we saw aspects of the aged care system back then superior to disability care. Problem is there’s been nine years of coalition government since then, and despite the challenges of the NDIS, the tables have turned a bit. Aged care and parts of its operation have fallen into a rut and NDIS, despite all the challenges, is still a scheme which looks better for people in aged care than what they have.

The scheme was designed [unclear] 65. I think there’s a challenge for disability care for people over 65. Whether or not the solution is an NDIS, which would be very expensive, or an improvement to the quality of disability care in aged care, that will be a matter for the whole of the government to talk through. I may pass over the Graeme Innes. If you step to your right a bit. Come across a bit more, mate.

Graeme Innes:

I haven’t got a lot more to add to the minister’s answer. In legal terms. I don’t think there’s discrimination because the law specifically provided for that in the NDIA Act and the various discrimination acts. But the minister’s commented on what the – you know, what the situation is for people as of now. And there’s various cause for that. I’ll be pleased to have conversations with my colleagues on the board and with broader government to see how that may be addressed.

Journalist:

So you agree the quality of disability support in aged care has fallen behind the NDIS in some respects or…?

Graeme Innes:

There’s aspects of aged care which have. But, you know, I need to get much more across both areas, again, it’s eight years since I have work in that discrimination field and specifically on the scheme and in aged care.

Journalist:

Em Rusciano gave a passionate speech about her ADHD diagnosis and her struggle to access treatment. She wants ADHD to be on the list of primary conditions supported by the NDIS. Are you going to look at potentially expanding the list of conditions that are on that list?

Minister Shorten:

I saw Em’s contribution and it was powerful. I asked the agency to give me more advice about diagnosis with ADHD in terms of eligibility for NDIS. There are tens of thousands of people who are on the scheme who are diagnosed with autism as their primary condition. Neurodivergence is an area where the eligibility requirements are not always clear and they depend on individual circumstances.

Journalist:

To Paul’s question, you mentioned it would be very expensive to include over 65s on the NDIS. Have you been briefed on what the exact cost would be?

Minister Shorten:

No, that’s just me using my common sense.

Journalist:

You have previously described Denis Napthine as chair of the NDIS a disgrace, but now he’s been appointed to the board. I was wondering if you have more information on your change of heart.

Minister Shorten:

I think the previous government rushed the appointment of a chair. He came on four days before the writs were issued. It would’ve been far more prudential of the previous government, not to put him in that invidious position, but also to have seen if it was possible to have

found a way of waiting until the election which was only a month later. Having said that, I also believe the scheme requires bipartisan support. I think we’ve got an outstanding chair of the scheme now. And I think you can tell even for you who are seasoned and hard bitten members of the very tough Canberra press gallery, you don’t always get to hear someone like Kurt speak here. And he’s impressive. So I don’t think – I don’t think there would be a single Australian who think it’s a bad appointment. Having said that, I’m keen to make sure that people who have got experience in government, in his own case, he’s – he and his wife have raised a son with disabilities and he was the Liberal Premier who helped negotiate the transfer of the NDIS agreement in 2013. The way I would want to see the NDIS run is to be a broad church where people feel include, not excluded.

Ros Childs, ABC News:

That was the Minister for the National Disability Insurance Scheme, Bill Shorten, announcing new appointments to the NDIA.

Kurt Fearnley is the new chair of the agency, and new board directors were also named. They’re Graeme Innes And Maryanne Diamond, who used to be the world president of the world blind union, and Denis Napthine, who resigned from his role as chair in July this year. We heard Kurt Fearnley saying he wants to build trust in the agency and in the scheme.

 

An open letter to all members of Australia’s next Federal Parliament

Vale Wendy Lovelace and Matt McCracken

Both Matt and Wendy were Queenslanders but understood that the fight for human rights, full inclusion and support to live great lives could only be won in a national campaign.

From the earliest days in 2011, Matt gave unstinting support to the EAC campaign for the NDIS.  He lobbied community and political leaders and was the driving force behind the legendary “Is Everybody Here?” community events and NDIS rallies in his Caboolture community near Brisbane. He was a mentor, leader, advocate and loving friend to anyone who needed him.

Wendy was an architect and a strong, independent advocate who influenced accessible home and building design and policy. Among her many advocacy roles Wendy was the State convenor for the Queensland Network for Universal Housing Design for many years.  Wendy was a strong supporter of the Every Australian Counts campaign for the NDIS, and played a key role influencing many disability organisations, QLD MPs and policy designers to get behind the NDIS.  Wendy was a loving and generous friend and a mentor to many.

Both Matt and Wendy were high achievers who wanted to make the world a better place, yet remained humble about their work and the positive impact they had on the lives of disabled children and adults and their families. Matt and Wendy were highly respected by their many friends and colleagues. Both will be greatly missed but their legacies will remain in the hearts and minds of the Queensland disability community.

Our thoughts and love are with their families, friends and loved ones. We thank Matt and Wendy for their vision, advocacy and courage and for their early and never-ending support for the NDIS and people with disability.

Media release: Labor and Greens have committed to fixing the NDIS – Morrison Government must detail its plans now

The future of the NDIS is a front of mind voting issue for the 500,000 Australians with disability who are currently covered by the scheme, as well as their families, advocates, and the 270,000 workers who support us.

Every Australian Counts Campaign manager, Jean Cotchin, said:

“People with disability want the same opportunities as everyone else: to have safe and secure homes, jobs, access to the company of the people in our communities, as well as dignity, security and hope for the future,” Ms Cotchin said.

“The NDIS was designed to make all of this possible. But over the last few years, things have changed.

“The individualised, respectful, world-leading disability scheme that people with disability, families and supporters fought so hard for is now facing death by a thousand cuts.

“Every single day we hear more and more stories from people who have had their NDIS funding cut – with no reasonable explanation.

“People with disability are being forced to jump through impossible hoops to access the essential supports and services they need – while the NDIA spends millions on intimidating private lawyers who are hired to take on the very people the NDIS is intended to support.”

Every Australian Counts looks forward to seeing more detail from Labor on today’s policy commitments to rebuild trust between our community and the NDIA by:

  • Putting a stop to unfair funding cuts
  • Improving the culture at the NDIA and introducing more people with disability to leadership positions
  • Fixing planning, reviews and appeals processes
  • Increasing funding for disability advocacy
  • Pausing some changes to allow for research and co-design
  • Lifting the staff cap, and decreasing spending on external legal and consulting firms
  • Releasing the data and assumptions held on people with disability, to allow independent, evidence-based research to inform future NDIS policy changes

Every Australian Counts has also welcomed commitments from the Australian Greens to a fully funded and staffed scheme, increased funding for disability advocacy, and more investments in the NDIS Quality and Safeguards Commission.

Ms Cotchin said people with disability are concerned a returned Morrison Government will keep the NDIS on the existing path of reducing supports and treating people with disability as numbers on a spreadsheet rather than human beings with human rights.

“People with disability, families and our supporters see this election as a critical moment. We are asking our elected representatives to stop, listen and get the NDIS back on track. People with disability deserve no less.”

Every Australian Counts is asking candidates from all parties this election to commit to go back to the scheme’s founding principles of giving people with disability dighnity, respect and control over their own lives.

Every Australian Counts is coordinating the ‘Defend Our NDIS’ campaign, with a major National Day of Action planned for April 28.

Download the media release here.

Which NDIS recommendations has the Federal Government actually delivered on?

The NDIS is a new way of doing disability support in the world – there is nothing else quite like it. And because it’s a world first, it didn’t come with a nice and well-tested set of instructions.

And as well all know – when the NDIS works well it completely changes people’s lives. We have seen and heard and experienced this for ourselves, from people all over Australia, for almost 10 years now.

But when it doesn’t work well it can have completely devastating consequences.

All of us want the NDIS to work well. Not just for ourselves or the people closest to us – but for everyone who needs it now and into the future.

And because it’s an original idea, and because unexpected things happen, and new decision-makers come and go, it’s no surprise the NDIS has been looked at and followed by a big range of different government inquiries over the years.

These inquiries are often make up by submissions that people on the ground have poured their blood, sweat and tears into – to try to make sure we get the best NDIS possible.

Your voices shape the recommendations that come out. And when they haven’t included you, the recommendations aren’t always that great. Because you know the reality of the NDIS on the ground.

Over the last couple of years, the NDIA and NDIS Ministers have continually talked about a small number of recommendations made in the past. Recommendations that appear to support changes they want to make – but many of you don’t trust.

So why don’t they give all of the other recommendations ever made that much attention?

Maybe they needed someone to put them all together in the same place? It is hard to keep track of them all.

So, to all of the people in charge of the NDIS – here’s where you can find a bunch of it, thanks to our friends from PIAC and Gilbert + Tobin.

More than 300 separate recommendations, with details about when and why they were made – and some notes on what the Federal Government did or did not do about them (or said they did or didn’t do).

And to make it a bit easier to find what you want, the spreadsheet design includes filters so you can change what’s in focus.

The inquiries they looked at include:

  • The Productivity Commission’s 2017 Study into Costs
  • The 2018 Commonwealth Ombudsman’s report into administrative reviews
  • The 2019 Review of the NDIS Act (‘Tune Review’)
  • The 2020 Joint Standing Committee Inquiry into Planning
  • The 2020 Joint Standing Committee Inquiry into General Issues
  • The 2020 Joint Standing Committee Inquiry into Supported Independent Living
  • The Australian National Audit Office’s 2020 review of decision-making controls
  • The 2021 Joint Standing Committee Inquiry into Independent Assessments

Check out the NDIS advocacy tool for yourself

🎯 NDIS Recommendations Tracker (online spreadsheet)

👉 More about the tracker from the PIAC website

👉 Guide to filtering the tracker (PDF)

Do you like what you see? Have other ideas? Let PIAC know – or leave a comment below.

Every Australian Counts website blocked from Federal Parliament wifi

UPDATE: Thursday, December 2

We have heard again that this website is only working from the Parliament House wifi sometimes.

And we have also heard that only some of the emails you have been sending are making it all the way through the Parliament House system to get to the Senators.

These issues are still being investigated.

More than 450,000 emails in total have been sent to the Senators by thousands of you – asking them to vote against harmful changes to the NDIS Act and Rules. But we still don’t know how many made it to the other side. We think a lot, probably – today is the last sitting day and the NDIS Bill is not on the schedule.

We will continue to do everything we can to find out what happened and get it fixed. We will keep you posted.


UPDATE: Friday, November 26

We have discovered today that our emails to Senators are not getting through. We are urgently trying to find out what has happened. Will will report back as soon as we know more.

We sincerely hope this is a technical problem, and that our emails have not been blocked.


This follows over 400,000 emails being sent to Senators urging them to oppose the extensions of powers to the Minister and NDIA CEO.

We have heard the website appears to be working from computers that are physically plugged into the network. But devices like laptops, mobiles, and tablets using the wifi network can not get through.

We are waiting to find out why, and when access will be restored.

Every Australian Counts (EAC) is a grassroots campaign made up of people with disability, families and our supporters. EAC helps our community learn about the NDIS and changes to it.

It helps people on the ground share their thoughts and experiences with decision-makers, like the people working at Parliament House today. And it makes it easier for politicians and other decision-makers to understand what’s really happening, and why their actions matter.

Every single Australian at Parliament House should have access to this website if they want it.

Especially during such an important moment between our community and elected representatives.

Vaccinating people with disability against COVID-19

“What a mess!” That’s how the COVID-19 vaccine rollout has been described by one of the many people with a disability who have shared their experiences with us. People have told us loud and clear that there have been big barriers from the get-go when it comes to getting the vaccine.

The too-hard basket

Unfortunately, we heard from lots of people about things that made the process too hard. Things like:

  • Booking appointments
  • Finding disability-specific information about where to go
  • Not being able to get priority access
  • Hard to find out and prove if you’re in a ‘priority group’
  • Being turned away
  • Being given inconsistent and contradictory information
  • Hard to find accessible vaccine hubs
  • Hard to find sensory-friendly vaccine hubs
  • Hard to get families and support workers vaccinated at the same time and place
  • No options, or long waits for people who need to get vaccinated at home
  • Not sure what to do for people with needle or medical phobias
  • No options, or long waits for people who need sedation
  • Being given the runaround
  • Waiting for the vaccine they want to become available
  • Hotline staff not having answers or knowledge about disability access
  • Not enough support or info for people with disability who do not live in group homes
  • Not being able to travel

These kinds of issues were echoed in the damning Disability Royal Commission Report released in late September, which said “the conduct of the vaccine rollout, especially to people living in residential disability settings and disability support workers was ‘seriously deficient’.”

What makes this all even worse is that in 2020 the Disability Royal Commission had already had a go at the Federal Government for not including people with a disability in their initial COVID response, and for their failure to consult people with a disability or representative groups when developing their strategy.

So how could things be better?

We have heard plenty of excellent ideas about how to make it easier for people with disability to get vaccinated.

The most common things people suggested were about:

  • Making home vaccinations possible and easy (this was by far the most common request)
  • Mobile vaccination units that come to you, or go to somewhere local that is safe, familiar and accessible
  • Having your usual trusted GP or health professional have access to enough vaccines so you can go to them
  • Having someone to find and book appointments specifically for individual people with disability (and their families too if they want)
  • Making sure information is available, accessible, and easy to find and understand
  • Having someone trusted to contact, who can offer practical help and answer your questions about getting vaccinated
  • Having someone trusted to take you to your appointment and back

What has already been helpful?

We are really happy to have heard from some people that getting the vaccine was a good experience for them. Things that helped included:

  • Service providers organising vaccination sessions for the people they support (and sometimes their families too), at their service
  • People with disability, families and carers being treated with respect, kindness, and patience
  • Staff at vaccine hubs making sure processes were accessible, smooth, welcoming and easy
  • Being able to easily find out where to find accessible vaccine hubs
  • Having someone to make the bookings
  • A person with disability’s family members or support workers being able to get vaccinated at the same time and place
  • Quiet, welcoming to all, and sensory-friendly spaces
  • The Disability Liason Officer service in Victoria
  • Help getting to and from the vaccine hub or locations
  • Social stories, videos, and Easy read guides to getting vaccinated

Kudos to all the health workers who have made this possible. We’d love it if the health system was this accommodating all the time!

Most of the people who had an easier time were people who had support from someone advocating strongly on their behalf, like a family member or service provider. People with less support have found it much more difficult.

What next?

Over the last couple of months, governments have been doing a lot more to try to make it easier for people with disability to get vaccinated. But States and territories are opening back up while a huge amount of people with disability are still unvaccinated, leaving many people concerned about risks to their health. The disability community is strongly advocating for the availability of home vaccines.

And, now with Pfizer vaccine booster shots being approved, with roll out expected from November 8th, people with a disability will continue to need easy access to the vaccines. Given the challenges with the initial roll out, it remains to be seen if the Government can deliver what is required, and in the right time frame.

Want to tell us about your experiences?

Just head over to the feedback form on our website and tell us about what has been good or bad in your experience.


Vaccine information and resources for people with disability, families and workers

Our friends at IDEAS have listed Easy Read information about vaccines, along with loads of other fact checked COVID information. Plus you’ll find social stories here and here, along with Auslan information here. Creaky Joints has also brought together COVID-19 Vaccine Information for Immunocompromised Patients.

Need help to book an appointment? The Disability Gateway has now said they can help with this.
Call 1800 643 787 – Monday to. Friday – 8am – 8pm.

You can also book an appointment online for an AstraZeneca or Moderna vaccine at a local chemist.

If you live in Victoria there is a Disability Liaison Officer Service that can help people organise their vaccines.
Some people may also be eligible to get the vaccine at home.

Each state and territory has different arrangements about how the vaccine is being rolled out, so please check for your state.

NDIS Information 

There is an NDIS COVID-19 vaccine payment for some disability support workers in NSW, Vic, WA, ACT and the NT. This is to cover any extra costs that may happen while helping people to get their vaccine.

There are also some temporary NDIS COVID19 measures available, but best to check in with your support coordinator about these to make sure that you are eligible.

Inquiries into NDIS, Independent Assessments, and the NDIS Quality and Safeguards Commission have been released by the Joint Standing Committee on the NDIS

Kevin Andrews MP is the Chair of the Joint Standing Committee on the NDIS.

On Tuesday, October 18, Kevin Andrews handed the Committee’s report over to the Federal Government in the House of Representatives.

This report is the result of an enormous inquiry by the committee which started in December 2020. Many, many people with disability, families, advocates, providers, experts, and groups from right across Australia had (a lot) of involvement in it. More than 900 people from the Every Australian Counts community had a say in our huge joint submission to the committee.

On Monday November 29 2021, two new reports on the NDIS were released in the House of Representatives.

Kevin Andrews MP released the latest NDIS General Issues inquiry report, as well as the NDIS Quality and Safeguarding Commission inquiry report.

The NDIS General Issues report also contains an interim report on the latest inquiry into the future of the NDIS, which allows the Committee to further investigate issues that came up – but were out of scope – during the Independent Assessments inquiry.

Shadow NDIS Minister Bill Shorten MP also made comments about the reports and the NDIS more generally.

📌 Links

NDIS Joint Standing Committee Independent Assessments inquiry report

NDIS Joint Standing Committee General Issues inquiry report

NDIS Joint Standing Committee NDIS Quality and Safeguards Commission inquiry report

NDIS Joint Standing Committee Current Scheme Implementation and Forecasting for the NDIS inquiry report

Why the Federal Government’s story about NDIS funding differences doesn’t add up

Before we get started we want to let you know – this is a bit of a long read, so now would be a good excuse to get settled with a cuppa.

Or skip towards the end for a very quick summary.

First – a message for the government and NDIA

Thank you for taking independent assessments off the table.

Thank you for promising to be more clear and transparent.

And thank you for promising to take action to rebuild trust.

People with disability, families and our advocacy and representative organisations have experienced inexcusable levels of distress since the plan for independent assessments were announced 12 months ago.

So it will take genuine, meaningful, long and hard work to rebuild the broken trust.

Trust

We can’t rebuild that trust based on what the Federal Government says the problems are. Like the suggestion that wealthier people from wealthier cities are getting a better deal on funding than poorer people who live in poorer areas. Or that functionality is decreasing over time.

So before anything else we need to all agree on what the problems are, together. People who use the NDIS know all too well what the problems are. And they have the best ideas on how to make it work.

If there are things we don’t know about – like cost pressures – we need the government to come clean. We need time, access and independent evaluation on all of the raw information that is causing concern.

No one cares more about the sustainability of the NDIS than the people who need it.

But before we jump into the detail…

Why do we want the data?

Why do we want the financial data and the assumptions and modelling behind it?

It forms the basis of all of the government’s arguments for changes to the NDIS.

Both the previous and current NDIS Ministers have been running a scare campaign on NDIS “cost blowouts” in order to get support for proposed changes to the NDIS legislation.

And while independent assessments are “dead”– we know that’s not the end of the story.

Minister for the NDIS Linda Reynolds is still working to get changes to the NDIS made into law. The Department of Social Services website was updated recently to say, “Public consultations on draft amendments to legislation are expected to occur from late August 2021 ahead of introduction to Parliament in October 2021.”

And over the last week or so, the Minister has continued on with the story started in March by our previous NDIS Minister Stuart Robert, who at the time told ABC radio, “If you live in the seat of Clark in Hobart, your average plan is $105,000. But, if you live in the seat of Franklin it’s $68,000. There’s a 53 per cent difference. Right now in Tasmania, your postcode determines your package and that’s not right.”

Until very recently, the Minister and the NDIA would not share any of the data behind their many similar claims.

Two new documents have been released

The first is a letter from Minister Reynolds to the Joint Standing Committee on the NDIS in response to questions from the Chair, Kevin Andrews MP. It is made up of around one hundred pages of spreadsheets – stuck in a PDF. Not designed for easy analysis…

It is not exactly what the Joint Standing Committee had been asking for. But it is a start.

For months now they along with many others – including the state and territory Disability Ministers – have been asking for full copies of the NDIS Annual Financial Sustainability Reports, and the assumptions and modelling behind it – going right back to the beginning of the scheme.

The second document to come out last week was the latest NDIA Quarterly Report.

In Minister Reynolds’ media release she said, “Issues identified in this report include inconsistent access and planning decisions and inequalities in packages based on socio-economic status. In an insurance scheme, where you live or your socioeconomic circumstances should not matter.”

We agree – but is that what the data really says?

Why the ‘mean’ averages are bad

The data provided shows the average plan funding people have been approved to use.

It is divided up into electorates or postcodes.

The first problem with the data is the way the government have chosen to explain who gets how much NDIS plan funding – by using mean to work out averages.

So what does mean mean here?

In mathematics there are two common ways to find an average number from a list of different numbers. ‘Mean’ or ‘median’.

Mean is when you add up the total plan funding for a particular number of participants – then divide the sum (total) by the number of participants in that list.

Median is when you list all of the plan funding amounts in the list in order from smallest to largest or vice versa – and then work out what the middle number would be.

Mean is the method the NDIA and Federal Government have been using to describe averages. But it doesn’t tell a reliable story.

Total allocated funding
Person 1 $5,000
Person 2 $10,000
Person 3 $15,000
Person 4 $20,000
Person 5 $30,000
Person 6 $40,000
Person 7 $50,000
Person 8 $100,000
Person 9 $200,000
Person 10 $1,000,000
Sum (total)   $1,470,000
Mean  $147,000
Median    $35,000

In the fictional example above – the Minister could say people with disability in this group get an average of $147,000 plan funding. But when you can see the individual amounts, it’s clear that the majority of people get much smaller plans. 80% of the people with disability on the list got less than $147,000 in their plan.

Big differences in plan funding amounts are exactly what we would expect from an individual scheme for people with an enormous variety of different support needs. That’s just one of the reasons everyone was so outraged at the idea of the 400 ‘personas’.

Using the median to work out the average would present a much more accurate average in the example – at $35,000. Which is pretty close to the actual national median:

  • The mean national plan funding size in the recent data is $70,200.
  • The median national plan funding size in the recent data is $31,700.

Allocation (how much you get) and utilisation (how much you use)

The data above only shows how much funding is allocated to a person’s plan. Allocation is the total plan funding amount you get. It is how much you could – in theory – use, if everything you needed was available when and where you need it, and everything was running smoothly.

But we know there is a huge difference between how much funding people get versus how much they actually spend. How much you actually spend is called utilisation in NDIS-speak.

So even though the NDIA need to budget for plan allocation – the reality is that most people don’t ever spend more than 75% of their funds – and the data we’ve looked at shows that people who don’t get Supported Independent Living (SIL) use much much less again.

We do know that the longer people have been in the scheme the better they get at spending their funds. There are many good reasons for that – like finally getting off very long waiting lists, finding the things you need, getting more confident, figuring things out…and so on.

Utilisation increasing over time is not cause for concern – it’s cause for celebration. It means people are getting more of what they need instead of just scraping by on the bare minimum.

So when the government talk about costs rising – keep this in mind. It could also mean that the NDIS is starting to work as it should for more people.

The largest plans are not with the wealthiest  people in the wealthiest cities

Despite what the Ministers have been saying over the last 6 months.

The federal electorates in red below are home of the 10 biggest average plan sizes across Australia. Starting with the Northern Territory.

Map of Australian electorates. The 10 electorates listed below are shaded red. It includes far north Queensland, almost all of the NT, and some places near cities like Perth, Adelaide, Hobart and Sydney. The regional areas in the NT and QLD stand out the most.

 

Federal electorates with largest average NDIS plan funding, versus how much is used

Federal electorate Mean plan size Mean spend (utilisation) Median plan size Median spend (utilisation)
Lingiari (NT) $139,200 $106,900 $64,884 $26,184
Solomon (NT) $114,100 $98,300 $34,261 $24,708
Clark (Tas) $102,800 $84,200 $40,270 $21,452
Bennelong (NSW) $98,100 $83,500 $39,073 $35,905
Perth (WA) $97,100 $73,300 $45,879 $22,090
Boothby (SA) $93,700 $78,000 $41,762 $20,601
Mackellar (NSW) $92,900 $77,100 $36,707 $24,648
Swan (WA) $92,400 $65,100 $44,901 $20,159
Leichhardt (Qld) $91,900 $67,700 $44,461 $19,303
Curtin (WA) $90,000 $61,200 $49,355 $20,540

So if we want to talk averages – people in the Northern Territory are getting plans worth around $120,000 (on average), but only spending 20% of that – or about $25,000.

That looks like a big problem.

And Victoria doesn’t even make it into the top 10, despite being home to many more wealthy people and cities than the Northern Territory.

As you can see – the utilisation is just a tiny fraction of what’s in the plan.

The largest average plans exist where there are lots of people who use SIL

A clear pattern begins to emerge when you compare the largest and smallest plan sizes. Here’s some of the data from Victoria.

Electorates in Victoria with largest and smallest average NDIS plan funding, versus how much is used, versus SIL

Victorian electorate  NDIS particpants with SIL  Mean plan size  Median plan size  Median spend (utilisation)  NDIS participants in the area 
Largest 3
Chisholm 10.5% $88,890 $64,884 $26,184 2,827
Goldstein 8.7% $75,100 $36,424 $19,507 1,797
Kooyong 9.4% $67,000 $40,645 $19,615 1,744
Smallest 3  
Lalor 1.3% $51,800 $24,839 $13,146 3,341
Calwell 0.9% $52,200 $25,093 $15,845 4,187
McEwan 0.9% $44,400 $20,327 $10,858 4,311

What changes in the top three versus bottom three electorates?

Two things:

  1. The number of NDIS participants in each area, and
  2. The percentage of people who are funded for Supported Independent Living (SIL).

People who live in group homes generally need more support – and that’s not a problem

People who have SIL funding in their plans are much more likely than any other group to use most of their funding – the majority of it is allocated to the SIL provider, and the SIL provider uses it or loses it. (They try not to lose it).

People who need SIL also tend to have some of the highest support needs of all people with disability using the NDIS. Primarily, they are people with intellectual disability and autistic people who live in group homes.

Some participants get more than others. Obviously. But it’s not because they are better self-advocates, or have more resources. It appears to be because the people who get more need more.

What is the government’s solution to that – now that independent assessments are done and dusted? Cut funding from those who need the most support? Cut funding from those who live in the cities?

That is not the NDIS we signed up for.

In summary

At first glance, we can see how it could look as though the funding levels in Victoria roughly reflect the socio-economic status of people who live in those areas.

But that is largely a result of how the data is presented, using mean averages instead of median – and dividing participants up into geographical areas.

What the data really says is the more people with very high support needs in any given area, the more likely they are to get more funding. And if a big chunk of that funding is for SIL it is more likely to be used.

Using the funding you have been allocated to access the supports and services you need is the entire purpose of the NDIS.

What’s next?

We know you are all tired. Exhausted. Over it.

We know you are all worried about COVID, and the vaccines, and the lockdowns.

And we know you are all worried about what the Federal Government will do to the NDIS next.

We are too.

But we want you to know that we are here for you. We are keeping a very close eye on everything. And we are ready to take action as soon as we need to.

As for right now – we want you to take good care of yourselves. It has been a relentlessly worrying and uncertain time for far too long.

All we want to ask of you is to take time out for self-care, frequently. Do some easy and relaxing things to take good care of yourselves. You might like to watch a movie, listen to music, read a book or magazine, chat with loved ones, get cosy on the couch, eat something yummy, get crafty, or find someone safe to talk to. We want you all to be safe and well.

We will let you know when we need your help to win the next battle.

Until then, we’ll be here holding the fort. x


If you’d like to read more

This is not a formal economic analysis – just a little introduction to some of the issues. If you would like to get more information from the sources you might find some of these links helpful:

NDIS Quarterly Report: 2020-21 Q4

Response to written questions by Senator the Hon Linda Reynolds, Minister for the National Disability Insurance Scheme, requested on 25 June 2021, received on 2 August 2021

Media release – Minister Reynolds 9 August 2021

Disability Reform Ministers’ Meetings Communiqué 9 July 2021

Disability Reform Ministers’ Meetings Communiqué 13 August 2021

NDIS Legislative Reforms: Timetable for legislation – Department of Social Services

Joint Standing Committee on the National Disability Insurance Scheme 05/08/2021 Independent assessments – Hansard

Brutal cuts to NDIS see some plans halved without consultation – The Saturday Paper

NDIS consultation on housing (and SIL)

NDIS consultation on Supported Decision Making

Onwards We Go!

Here’s what went on over the last week or so…

Senate Hearings

The  Senate Standing Committee Finance and Public Administration turned its gaze on the people that work at the NDIS and the Quality and Safeguards Commission at a hearing last week. 

We heard, again, about the kind of problems that we’ve heard about so many times – delays in getting complaints handled, NDIS staffing caps, labour issues, information technology issues and the lack of expertise across the NDIA and their contracted organisation. 

Disability organisations told the Senate inquiry that there’s a big problem with the lack of understanding about disability (where have we heard that before…), and that’s making life hard for people with disability and their families.

The union that represents staff at the NDIA talked about how there has to be enough people working there to get the job done and get the job done well. We know that the NDIS will work better when the people working there have the training, and the understanding about people with disability and our families.

Where to From Here conference

At the Where to From Here conference last week disability service providers, people with disability and families shared ideas and thoughts on the future of the NDIS. 

Minister Reynolds told the conference about the decision to end independent assessments and the NDIS CEO Martin Hoffman said that all this hasn’t been easy for anyone, and he regrets what happened.  

They both talked about co-design, even though it isn’t clear what they mean by co-design yet.

Both John Walsh and Bruce Bonyhady had strong words to say about how the NDIS is working, and what needs to change to make sure that people with disability and families can get the support we need.

Dougie Herd, the raconteur and fierce advocate that he is hit the nail on the head:  “My life is governed by decisions that people take about things like my NDIS package, if you think I’m going away, just because you’ve decided to implement a new policy initiative, you’re wrong. I’m not ever going away anywhere, & neither are the other 4 million people with disability in Australia”

Dougie is right, and we’re not going anywhere. We are here, strong, resilient and absolutely ready for the work ahead. The NDIS matters more to us than anyone. On our terms. 

The NDIS also has a couple of crucial consultations open at the moment. One is about support for decision making, and the other is about home and living options.

You did this! NDIS compulsory assessments have officially been dumped

And the big message to come out after the meeting was – NDIS independent assessments as we know them – are OVER.

How did this happen?

📌 In less than a week, more than 5,000 people with disability, families, and people who work in the sector contacted the state and territory Disability Ministers ahead of the meeting on July 9.

📌 Over the last three months more than 7,500 of you emailed Minister Reynolds to say “Hands off our NDIS”. Before that, former NDIS Minister Stuart Robert received more than 4,000 emails.

📌 And since the plans were first announced at the end of August last year, thousands of emails, phonecalls, media stories and submissions have made their way into the hands of the powers that be.

📌 Because of your actions the state and territory Disability Ministers were able to go into Friday’s meeting armed with your concerns, and those from the IAC– making it much easier for them to say NO THANK YOU.

📌 And because enough of those state and territory Ministers rejected the Federal Government’s plans Minister Reynolds was forced to announce “Independent Assessments are dead.”

But compulsory assessments were never the only big change people have been worried about.

There are plenty of unanswered questions

What’s the difference between a ‘person-centred’ assessment and an ‘independent’ assessment?

Do they still plan to change the definition of reasonable and necessary?

Do we have any reason to believe work on the algorithm/black box/personas has stopped?

Will they cancel the contracts with the assessment providers?

What are their plans for genuine and transparent co-design?

And what about the legislation – when will we find out what they’re planning to put in and take out? How long will we get to provide feedback on it? When do they want to introduce it to Parliament? What will they try to sneak in?

And how transparent will they be with the ‘cost-pressures’?

So while we still have many more questions than answers – two things are for sure.

This is an enormous victory.

And YOU made it happen.

People with disability, families, the organisations who support us – and everyone who has raised their voice to fight for our NDIS have made an enormous difference.

And while we are all going to remain very cautious about what comes next – we don’t want you to forget to take a big moment in recognition of what you have all done by working together and making yourselves heard.

You stopped independent assessments.

From the bottom of our hearts – we thank you.

Stay tuned – we will let you know about what comes next as soon as we know more.


Communiqué

Disability Reform Ministers’ Meeting (DRMM) – Communiqué – 9 July 2021

Statements from the Ministers

Federal Government Minister for the NDIS Linda Reynolds
Disability reform Ministers’ meeting on 9 July

Australian Capital Territory Disability Minister Emma Davidson
Win for community as Independent Assessments scrapped

New South Wales Disability Minister Alister Henskens
Disability Reform Ministers’ Meeting

Tasmania Disability Minister Sarah Courtney
Disability Reform Ministers’ Meeting (screenshot via Twitter)

Victorian Disability Minister Luke Donnellan
Twitter

Western Australia Disability Minister Don Punch
Disability Services Minister welcomes sensible decision to scrap independent NDIS assessments

Media 

The Guardian – Disability sector celebrates after Coalition forced to scrap NDIS independent assessments

The Conversation – NDIS independent assessments are off the table for now. That’s a good thing — the evidence wasn’t there

Sydney Morning Herald – Reynolds scraps independent assessments in NDIS after state revolt

ABC – NDIS Minister says independent assessments model is ‘dead’, in win for disability advocates

Canberra Times – NDIS plan dumped in major Morrison government backdown

SBS – The federal government has scrapped its controversial NDIS independent assessments plan

ABC Radio National (audio) – Linda Reynolds apologies for concern caused by NDIS independent assessments

The Project –

“Stop independent assessments. Sack the CEO. Sack the Board.” Catch the blistering NDIS speech from disability advocate Kevin Stone

“There are very few people working at the NDIA, or in government now, who remember the campaigns and rallies of the past, so let me remind you. We will not stand by and watch this happen. We will not be bullied or bought off. People with disabilities and their families will come together across the country and we will fight you.”

Kevin Stone – summing up exactly how people with disability and families are feeling about NDIS compulsory assessments and other proposed changes to the NDIS Act.

Kevin is the CEO of VALID and the Chair of Inclusion Australia – advocating and representing people with intellectual disability in both Victoria and across Australia. They represent many of the people with disability who will be some of the most seriously disadvantaged if the government’s planned changes get through parliament.

Watch Kevin’s speech, read the transcript, or join the fight and find out how to take action below.

Transcript:

I’m Kevin Stone. I’m the CEO of VALID and the Chair of Inclusion Australia.

Late last year, VALID stopped working with the NDIA on anything to do with their independent assessments. We had come to the conclusion that they do not have the best interests of people with disabilities or their families at heart.

Nothing they have said or published since persuades me that we got it wrong.

They dress it up in all sorts of clever ways but the bottom line is that they are bent on dismantling the scheme that we fought for. In many ways, what we’re fighting is the tide of a dark history coming back to haunt people with disabilities and their families.

More than 10 years ago we rallied in support of the NDIS. We were fighting for a disability support system that would live up to the vision of the United Nations Convention on the Rights of Persons with Disabilities. A system that would create a quality of opportunity for all Australians with disabilities.

Unlike a lot of people working at the NDIA now, people with a disability and their families remember how it was before, during the 1990s into the new century when we had the Commonwealth State Territory Disability Agreement. It was a cruel and inefficient system with federal and state governments arguing and buck-passing as people with disabilities languished on waiting lists all over the country.

While politicians passed the buck, many people with disabilities remained hidden away in institutions and many died without ever receiving proper support. When the campaign for the NDIS succeeded, it gave us hope that we had left those dark times behind. The NDIS was meant to put Australia on the right side of history to close institutions and institutional mindsets forever.

The NDIS was designed as insurance for all Australians if and when they need it. It’s been a wonderful thing to see so many lives transformed for the better by the NDIS.

It’s had its problems which we’ve all been willing to work with them to fix.

But we have come to the conclusion that they are not really trying to fix it. They are trying to take us back to the bad old days of buck-passing, rationing, and of putting people with a disability back into their bureaucratic cost-cutting boxes.

Right now, big decisions about our NDIS are being made by powerful people who do not understand the impact of the changes they are making. Dirty deals are being done to satisfy vested interest groups. Massive money is being wasted on consultancy firms with no transparency or accountability.

Powerful privatised service empires are being built on the backs of disempowered people.

Bankers, business people, and insurance actuaries are devising new ways to clump, cluster, and classify Australians with disabilities for the convenience of government.

It is prejudice, disguised in new and ugly forms.

And we will not stand by and let it happen.

These so-called ‘independent’ assessments are not independent at all. The NDIA have chosen who will do the assessments and they are paying per assessment. The more assessments they do, the faster they do them, the more they get paid.

That’s not independence, that’s a scam.

When we stop viewing people with disability as individuals and turn them into so-called ‘personas’ – when we put people into boxes as the NDIA is trying to do – those of us with a sense of history know where it leads. In five, ten, 15 years from now, the bureaucratic boxes they are building will become the new and more insidious institutions of the future. Less visible in the asylums of the past but just as shameful.

Like many people with disabilities and families across the country right now, I have lost all confidence in where the NDIA is taking us.

They have made it clear that they trust no one. The NDIA does not trust participants and their families to speak to their own needs.

They’re assuming people with disabilities are ignorant and greedy. So, they demand assessments to prove every last thing – but then they ignore those same reports.

They say doctors and allied health professionals can’t be trusted, because of so-called ‘sympathy bias’.

They do not trust service providers, who they say are over quoting.

They do not even trust their own planners and delegates to make the decisions that they are employed for.

According to the NDIA and the Minister for the NDIS, no one can be trusted, and everyone is a liar. But it is the NDIA who has manipulated and hidden the truth.

They have misquoted academics.

They have set up sham trials for a process that they have already decided will happen.

They’ve refused to allow public scrutiny or independent evaluation of the secret black box that they call the ‘Personalised Budget Tool’. This black box contains a decision making algorithms, that will make or break people’s lives. They will not tell us what else they will use that data for.

They hold round table meetings and phony consultations with our advocacy peaks. They have no intention of genuinely listening.

They say compulsory tick-a-box assessments administered by a stranger will make the scheme fairer. They say the changes will be good for us. And when we disagree they say we’ve misunderstood them. They think we just don’t get it. We know exactly what they’re doing.

We’ve been here before.

This is the government that brought us Robodebt for Centrelink. Who have bungled the COVID vaccine rollout – deprioritised people with disabilities and put their lives at risk.

And now they want us to accept Roboplans.

We will not.

Government Ministers and NDIA executives have become obsessed with automation at the expense of everything and everyone.

NDIS independent assessments will put people with disabilities back onto the conveyor belt to congregation. Because it will be all that their funding will afford them. And don’t be deceived. This isn’t by accident. This is by design.

Recently, we’ve heard dangerous comments from the Prime Minister, the Minister for the NDIS and the NDIA itself – insinuating that some participants might be too expensive. Suggesting that people with disabilities themselves are sending the scheme broke.

It’s dog whistling. Just like former NDIS Minister Stuart Robert, howling on the sex therapy issue.

It is contemptible stuff.

They are trying to turn Australians against the very spirit of the NDIS that the whole nation showed its support for – an NDIS that gives people respect, dignity, choice, control, and human rights.

We need to understand, the compulsory assessments are just one part of their big, bad plan.

They are going to ignore your goals.

Planning will be non-existent.

They want to stop the states and territories from being part of the decision-making.

They want to control your choices by redefining reasonable and necessary.

They wanna strip away self-management, dial back support coordination, and fund more congregate housing.

The NDIA is at risk of turning people with disability and families – who have been the scheme’s greatest supporter and most important ally – into a desperate and angry enemy.

There are very few people working at the NDIA or in government now, who remember the campaigns and rallies of the past so let me remind you.

We will not stand by and watch this happen. We will not be bullied or bought off. People with disabilities and their families will come together across the country, and we will fight you.

So once again, I say to the new Minister for the NDIS Linda Reynolds – stop the independent assessments debacle before it causes further damage. All the problems they tell you will fix are only gonna be made worse. So cut your losses while you still can.

  • Cancel the independent assessment contracts and put those hundreds of millions of dollars back into the scheme, so it can do the job it is intended to do.
  • Release the data – the raw numbers on what is happening with the NDIA’s budget. And commission independent research to understand the problems.
  • Sit down with disability representative organisations, work with us to objectively identify the problems and test the solutions, and co-design the improvements that are needed.
  • Sack the NDIA CEO. Sack him.
  • Ditch the consultants and sack the rest of the content-free executives who know everything about banking and insurance, but nothing about the lives of people with disabilities and their families.
  • And while you’re at it, replace the NDIA board. They have betrayed our trust and lost our confidence.

Over the past 2 days we’ve come together across Victoria and Australia, and we’ve talked a lot about the threats posed by COVID-19 and the things we need to need to do to stay healthy and connected. And many people have also talked about the threat posed by the NDIA’s independent assessment plans.

People with disability and their families have told us – and we will tell the world – we can’t be beaten.

Take action

Hands off our NDIS

Want to take action right now? Our powerful community can keep the pressure on Minister Reynolds – she can put a stop to dangerous independent assessments!

Email her to let her know it is time for the government to keep their #HandsOffOurNDIS!

Terms of engagement for NDIS Minister Reynolds from the disability community

Australia’s major disability representative and disabled persons organisations have been increasingly concerned that the NDIS is changing in order to slash costs – rather than continue the investment in individualised services and supports for people with disability.

This is an opportunity for the new minister to build a new model of engagement with people with disability based on mutual respect and common sense of purpose. Without this commitment it is difficult to see how people with disability and the disability community can continue to work productively with the NDIA.

Mary Sayers, CEO of Children and Young People with Disability Australia (CYDA) on behalf of the group of disability advocates, said that this is a pivotal point in the development of the world-leading NDIS.

“This is a truly defining moment for Minister Linda Reynolds. It will determine how willing she is to engage in real consultation with us on behalf of over 430,000 people with disability who use the NDIS and their families.

“The NDIS is a critical piece of Australia’s social infrastructure, like Medicare. The success of the NDIS should be defined by how well it supports people with disability.

“People with disability, our families and community will continue to speak up against these changes, but we need a reset in this relationship. The flawed and widely criticised plan to introduce NDIS compulsory assessments shows what happens when people with disability and their representative organisations are not involved. We are deeply concerned that this is a giant leap backwards with processes in place that are unreliable and unethical.

“We are asking for the Minister to stop, rebuild trust and respond to our concerns. The time is now,” she said.


A way forward for the NDIS: Terms of Engagement with the disability community

This is the opportunity for the government and the disability community to reset the relationship to build a better National Disability Insurance Scheme (NDIS) for all Australians.

  • The NDIS is a critical piece of Australia’s social infrastructure, like Medicare.
  • Operating to its founding principles the NDIS saves costs to government and delivers social and economic dividends for Australia.
  • We all share the risks and rewards of the NDIS so its ongoing development must be collaborative with people with disability, our families and our community.

Our 5 Terms of Engagement

1.

People with disability must be at the centre of decision-making as partners in the NDIS.

2.

People with disability must be represented in NDIS governance, in the leadership of the National Disability Insurance Agency, and in the delivery of the NDIS.

3.

Engagement must be honest, transparent and respectful.

4.

Changes to the NDIS need to be co-produced in collaboration with people with disability, our families and our representative organisations.

5.

Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities underpin engagement.

 What needs to happen next

  • Stop all proposed changes to NDIS access and planning.
  • Government commits to these Terms of Engagement and work with us to develop action plan to improve the NDIS for all Australians.
  • Immediately review and strengthen the governance of the NDIS – including the accountability of the NDIA.

Who supports this:

Australian Federation of Disability Organisations

Children and Young People with Disability Australia

Disability Advocacy Network Australia (DANA)

Every Australian Counts

First Peoples Disability Network

Inclusion Australia

National Ethnic Disability Australia

People with Disability Australia

Women with Disabilities Australia

Young People in Nursing Homes Alliance

Autism Aspergers Advocacy Australia (A4)

Blind Citizens Australia

Deafblind Australia

Down Syndrome Australia

Physical Disability Australia

Australian Autism Alliance

AEIOU Foundation

AMAZE

Australian Society for Autism Research (ASfAR)

Australian Advisory Board on Autism

Autism Queensland

Autism SA

Autism Spectrum Australia

Autism Tasmania

Autistic Self Advocacy Network of Australia and New Zealand (ASAN AUNZ)

I Can Network

The Sycamore School

Autism Association of Western Australia


More

Joint media release

Disability groups urge NDIS Minister Reynolds for a reset – PDF

Terms of Engagement

A way forward for the NDIS: Terms of Engagement with the disability community – PDF

Related

Joint media statement from disability advocacy organisations on NDIS assessments

Disability sector statement on the Australian Government’s planned reforms to the National Disability Insurance Scheme (NDIS)