I want to acknowledge the Traditional Owners of the Canberra region – the Ngunnawal and Ngambri people – and pay my respects to their Elders, and any other Elders with us today.
And I want to take this opportunity to speak directly to Australia’s First Nations peoples in the aftermath of the Voice referendum.
What I want to say is this:
You are not alone.
The long walk to Reconciliation is not over.
Many millions of Australians have walked, are walking and will keep walking beside you until we reach Reconciliation and unite our country.
The last time I came the National Press Club was April 18.
Back then, the independent NDIS Review was halfway through its 12-month assessment of the National Disability Insurance Scheme.
Today, we have released the final independent report of the NDIS Review – and I am here to talk to Australians with disability and their families, particularly…
…and the Australian people, generally, on its recommendations.
I won’t be talking about the Disability Royal Commission for which my colleague Amanda Rishworth is Ministerial lead...
…and for which the Government is still receiving public responses to that landmark report.
But, returning to April, people were anxious about the future of the NDIS.
People are still anxious.
I understand that anxiety.
No one wants to go back to the days of the misery Olympics when Australians with disability were at the mercy of a broken system;
No one wants to go back to the days when Australians with disability were forced to rely on charity to fundraise for wheelchairs or a place to live;
No one wants to go back to the midnight anxiety faced by 80 year old parents wondering who would look after their disabled son or daughter when they no longer could;
Let me be clear.
Australia is never going back to the bad old days.
But we need to find a way forward – together.
The States and the Commonwealth – including the Federal Opposition – have a common interest and a shared responsibility to secure a lasting and constructive outcome.
We need each other; we can’t dance alone.
The Australian people expect nothing less.
Those community expectations remind me of something the late Bill Hayden wrote:
‘Australians feel uncomfortable with extended public conflict and expect reasonable people to work out compromises. They tend to reject people they see as rigidly clinging to a point of view … It is therefore imperative to respond to seemingly reasonable offers.’
In other words, Australians are practical people who expect their governments to get stuff done.
More importantly, Australians with disability, their families and carers, need us to fix the NDIS …
... just like, in 1975, they needed Hayden to create Medibank – the national health scheme that he called the ‘Mark 1’ version of Medicare…
.. and just like they needed a Labor Government, in 1984, to reboot Medibank as Medicare.
Much the same can be said about the NDIS.
Mark 1 of the NDIS – launched in 2013 – has delivered a lot for Australians with disability.
And now, we need to finish the job and reboot the NDIS to deliver Mark II of the Scheme.
That reboot is the purpose of the NDIS Review.
The Review recommends actions needed to be taken over the next few years to help get the NDIS back on track and deliver better outcomes – not just for Australians with disability but all Australians.
And – this is important – those actions would not be unilaterally delivered by government.
The actions will be developed and implemented with the disability sector.
Yesterday’s National Cabinet committed to securing the future of the NDIS, so it can continue to provide life-changing supports to future generations of Australians with a disability.
National Cabinet agreed to implement legislative changes to the NDIS to improve the experience of participants…
…to restore the original intent of the Scheme to support people with permanent and significant disability, within a broader system of supports.
National Cabinet also agreed that the design of additional Foundational Supports would be jointly commissioned by the Commonwealth and the states.
Today, I want to brief you on the findings and recommendations of the NDIS Review.
In my last Press Club address, I explained why Labor established the NDIS and how, under previous administrations, it’s veered off track.
I won’t plough that ground again.
But I do want to repeat something I said in April:
‘The National Disability Insurance Scheme is here to stay.
‘It is not going away.
‘But…we need to get it back on track.’
That was the Albanese Government’s position in April.
That is still our position.
If anything, the NDIS Review has reinforced our position.
The Review was given three overarching objectives:
- Put people with disability back at the centre of the NDIS.
- Restore trust, confidence, and pride in the NDIS.
- Ensure the sustainability of the Scheme for future generations.
The independent NDIS Review Panel travelled to every state and territory – including regional and remote communities…
…heard directly from more than 10,000 Australians, worked with disability organisations to reach out and listen to more than 1,000 people with disability and their families…
…recorded more than 2,000 personal stories, and received almost 4,000 submissions.
In their interim report – released in June – the Panel identified five key challenges.
- Why is the NDIS an oasis in a desert?
- What does ‘reasonable and necessary’ supports mean?
- Why are there many more children in the NDIS than expected?
- Why aren’t NDIS markets working?
- How do we ensure the NDIS is sustainable?
Let me quickly explain how the Review found these the key challenges facing the Scheme.
The Review Panel heard that, when the NDIS works, it changes lives – hundreds of thousands of lives.
But it could work more transparently, more equitably, more consistently.
The Review heard about the erosion of non-NDIS disability supports since the introduction of the Scheme, turning it into the only lifeboat in the ocean.
The Review recommends ways to fix this design flaw.
We need to develop supports for people whose disability doesn’t have a significant impact on their daily life or impact their daily functioning in the same way…
…or people whose condition does not require the same level of support…
…or people who don’t need individualised funding to meet their needs or do not have the same level of need as those in the NDIS.
These supports would create a continuum so there would not be such a focus on being ‘in’ or ‘out’ of the NDIS.
The Review raised concerns that, in the past, the National Disability Insurance Agency changed what qualifies as ‘reasonable and necessary’ without any changes in the legislation, rules, or operating guidelines.
This led to confusion and contested decisions and the inconsistency of outcomes for people with similar levels of need.
The Review found the costs of the NDIS were growing much faster than anticipated – partly because it is being used as a cash cow by some service providers…
…and found the Scheme’s participant profile differs from the expectations expressed in 2011.
Almost half of participants in the Scheme are children. None of the actuaries saw that coming.
Other differences include the fact that,
Support for children and families does not align with best practice,
More adult participants need decision-making support,
The Scheme has not properly supported people with a psychosocial disability,
And demand has not slowed as expected.
Another key finding concerns the NDIS services marketplace.
In short, the market is failing.
The market works for some people, but there are serious issues with accessibility, equity, outcomes, quality, safety, and fraud.
There is a world of difference between living in Sydney or Melbourne or living in northern Tasmania or Longreach or Maningrida.
One size doesn’t fit all when it comes to accessing services.
We must – in the interests of participants – put an end to the laissez-faire approach to service delivery.
We need to shape and guide service delivery – there cannot be a five star scheme for the wealthy professional class and nothing for the poor.
The Review’s final key finding was that the National Disability Insurance Agency focused more on control than delivering the supports participants needed to achieve long-term life goals.
This will change.
Under the leadership of Kurt Fearnley and Rebecca Falkingham, the NDIA is working hard to improve the experience of participants in the Scheme.
Before I move to the recommendations, though, I want to say a few words about the National Cabinet process.
There was a lot of manoeuvring in the lead up to yesterday’s National Cabinet meeting and today’s release of the NDIS Review.
But real progress was made.
With that in mind, I want to thank my Prime Minister, Anthony Albanese, and my colleagues Jim Chalmers and Amanda Rishworth for their unceasing support.
And I also want to thank the states and territories for their contributions to everything, from the Terms of Reference for this Review, to the selection of panel members, to the secondment of staff for the Secretariat.
After all, the NDIS Review has always been a collective effort.
Now, we need to keep working together to finish the job and reboot the NDIS.
This responsibility we share is bigger than the eternal tug-of-war of Commonwealth-State relations.
This is about the lives of the one-in-five Australians with disability.
That’s 4.5 million people – including 2.5 million who are under 65.
So let me be clear:
Our reforms are designed to ensure that every dollar of NDIS support gets to those for whom the scheme was created.
It is about our obligation as a society to assist Australians with disability and their families to be able to live a fulfilling life.
I’ll go further.
Only around 600,000 Australians are participants in the NDIS.
None of us are absolved of making society more inclusive and accessible for the other to the 3.9 million Australians with disability.
So yesterday was a big deal. A breakthrough for all people with disability.
Together the Commonwealth and the States and Territories ensured the NDIS would not be the only lifeboat in the ocean…
…and I congratulate my state and territory brothers and sisters.
Now let’s do this – together.
That brings me to the independent Review recommendations.
The final report has 26 recommendations and 139 actions.
The Review makes its position plain in the Final Report:
‘Each and every one of our 26 recommendations and 139 actions must be considered as a whole.
Together, they provide a practical blueprint for a world-leading ecosystem that will put people with disability at the centre.
‘For that to happen, it will need to be well-planned, well governed, and designed and delivered in partnership with people with disability and their families.’
Rather than run through a laundry list of those recommendations and actions I will detail the seven biggest changes.
The first big change is foundational supports. (Recommendation 4)
The Review wants to create a connected system of support for people with disability and their families – regardless of whether they are participants in the NDIS.
These are called foundational supports because they are foundations for a good life – as well as foundational to the sustainability of the NDIS.
This recommendation would provide new disability supports outside the NDIS – and mean that the NDIS was no longer the proverbial sole lifeboat.
There would be two kinds of foundational supports – general supports available to all people with disability…
…as well as supports targeted and specifically designed for people who are not eligible for the NDIS and whose needs cannot be met through mainstream services.
National Cabinet agreed that the design of additional Foundational Supports would be jointly commissioned by the Commonwealth and the states…
…with the work overseen by the First Secretaries Group.
Additionally, the Council of Federal Financial Relations will have oversight of the costs of the reforms and report to National Cabinet.
The second set of big changes recommended relate to better connecting people with a disability with supports inside and outside the NDIS. (Recommendation 4).
The Review wants to give people with disability and their families more help to find their way around this new disability support system.
Currently, there is no single point of contact for people with disability who are trying to navigate the NDIS.
This confusion makes it more likely people will miss out on the services they need.
Confusion is a fairness issue.
Not least because the two largest cohorts in the Scheme are autistic people and people with intellectual disability.
The Review wants to see the creation of two types of navigators.
General navigators would be available to help all people with disability connect to mainstream services.
While specialist navigators would be available to help participants with more complex needs or circumstances.
Creating a navigator workforce would take time.
But I have no doubt people currently working as support co-ordinators would make great navigators.
The third big change is the need to humanise the planning process.
The current planning process is bureaucratic, traumatising, even dehumanising.
People say dealing with the planning process is like a second full-time job – and preparing for a planning meeting feels like going to war.
People are tired of having to prove every year that they’re still blind or in a wheelchair or have Down Syndrome.
People are tired of receiving support budgets that make no sense and may as well have been written for someone else.
Dealing with the NDIS should be simple and fair.
Applications should be based on need and not rely solely on diagnosis.
No longer ‘what is your label?’.
But ‘how does your impairment impact your life?’.
As has always been the case, choice and control, and ‘reasonable and necessary’ will remain at the heart of the Scheme.
And evidence-based supports that deliver real beneficial outcomes are in!
In short, dolphins, overseas cruises and crystal therapies – out!
If assessments are needed they should be paid for by the NDIA.
Access to the Scheme should not depend on whether someone can afford to pay for expensive reports.
When it comes to determining how much funding a participant receives that should also be based on need.
Comprehensive assessments of support needs should be completed – in person – by trained, qualified assessors…
…and participant budgets should be flexible.
Need should drive process, not the other way around.
The fourth big change would deliver better support to children and their families.
The review argues that the Scheme currently focuses too much on the diagnosis of disability and not enough on the supports a child needs to achieve their potential.
As a result, early intervention supports for children are often delayed.
The Review wants to ensure children with disability and developmental concerns are identified early.
They also want early intervention to be based on evidence and family-centred practices that are proven to deliver the best outcomes for children.
We don’t want kids enduring childhoods of 40 hours of weekly therapy where there is no evidence of it being beneficial.
Kids deserve the chance to be kids.
Not enough support has been given to families, and we know children thrive when families are well supported.
Importantly, it shouldn’t matter whether these supports come from inside or outside the NDIS.
In recommendation 6, the Review calls for a more connected system of mainstream services, foundational supports and the NDIS, to make sure support is matched to the needs of children and their families…
…and a key contact to help coordinate supports for a child or children.
This lead practitioner will have expertise in childhood development and help coordinate a supportive team around the child and family.
I want to say one more thing about support for children and their families.
There has been some unhelpful – at times stigmatising – commentary around children and adults with autism.
This singling out is deeply unfair and distressing for people with autism – so, I want to speak directly to you.
You are part of the disability community and you deserve better than unfounded gossip and needless anxiety.
This Review has not been about finding ways to exclude people with autism or leave children without much needed support.
If you read the Report, you will see it recommends removing diagnosis as the primary basis for entry to the Scheme because that approach is unfair.
The recommendation is to create a unified, connected system of support and, most importantly, support levels matched to need.
Your child may need a modest amount of support that should be found in mainstream settings like schools and kindergartens or through the foundational supports which will be ramped up through additional investment.
If your need a high level of support, the NDIS will be there for you.
This approach is about making sure all kids have the best chance at life – and matching supports with needs.
The fifth big change recommended is in the area of psychosocial disability and mental health.
Despite the best endeavours, the Scheme has not worked well for participants with a psychosocial disability.
Current approaches to planning don’t take enough account of the episodic nature of these disabilities.
In addition, services are not always based on what we know works well.
The Review says a new approach would better meet the episodic nature of psychosocial disability and mental health and focuses on recovery (Recommendation 7).
What does this look like?
- Creating an early intervention pathway for people with psychosocial disability.
- Coordinating NDIS services with public mental health systems.
- Developing foundational supports for people with psychosocial disability who are not NDIS participants.
- Establishing new standards for service providers.
- Introducing psychosocial recovery navigators to make sure people have access to specialised support.
And to be clear: it is the intention of the Review that people with psychosocial disorders that are significant and permanent will remain covered by the NDIS.
The sixth big change involves creating fairer housing and living supports.
Many participants don’t get to choose where they live or who they live with.
At best, this state-of-affairs is manifestly unfair.
At worst, it risks condemning people with disability to segregated institutional life – with minimal oversight.
We cannot allow that to continue.
We have to get rid of the criminals and rorters and the slum landlords using housing and living supports to take advantage of people with disability – and create real choices for people with disability.
Decisions about housing and living funding must be be fair and consistent. (Recommendation 8)
That means making sure funding decisions are only made after a comprehensive assessment of support needs.
Under this reform, most participants would receive funding based on sharing supports with two other people.
Let me be clear, though. If a participant’s comprehensive assessment shows they need more individualised supports they will receive more supports.
Also, sharing supports does not mean you have to share a house.
It is hoped that sharing supports would actually help people to connect with others – having the flexibility to
form friendships and address the isolation faced by too many people with disability.
Fairer and more flexible and transparent funding decisions would help drive the development of more innovative housing options – enabling people to live independently while sharing supports.
They have a point.
Innovation has been discouraged, with this recommendation it would be encouraged.
The evidence suggests that better design can deliver more, rather than fewer, options for people with disability.
To stimulate innovation, though, we would need to create rules that are clear, transparent, and fair.
The seventh big change from the review recommendations concerns the quality, safety, and integrity of the Scheme.
This is a critical area of reform because, frankly, it is Australians with a disability who suffer the most because of fraud and exploitation in the NDIS.
In April, the Federal Budget included a $48.3 million investment to crack down on fraud and non-compliance payments.
That is why the Review wants all service providers to be visible to the NDIA and the NDIS Quality and Safeguards Commission.
So that payments could be reported in real time, to help prevent everything from fraud and sharp practice, to price gouging and overservicing.
And so people with disability can choose from a range of quality services – and make sure they are safe.
That means the NDIS would no longer pay unregistered providers. (Recommendation 17)
A proportional regulation system would be created – the level of registration dependant on the level of risk of services and the settings they are delivered in.
For providers delivering low-risk services, such as mowing the lawn, registration or enrolment would be simple.
For providers delivering more personal and complex services, such as in-home services, there would be greater oversight.
And people with disability and providers would be involved in designing and testing the system to make sure it works. It would also be brought in over time.
We don’t want people to lose support.
But we also don’t want people to be at unnecessary risk.
Those are the big changes being suggested…
But nothing is going to change overnight.
The scheme will keep growing.
The focus is on the future.
We are doing things with people, not to them.
The Review estimates that the improvements will take up to five years to fully implement.
Believe me, I will fight every day for a better deal for people with disability and their families.
I’d like to finish on a personal note.
My first job in politics – back in 2007 – was in the disability portfolio.
That job – as a parliamentary secretary – changed my life.
I went to places – institutions, group homes, hospital wards – where people with disability were shut away from everyday society.
I met thousands of Australians – mums and dads, sons and daughters, friends and siblings, workers and carers – whose lives intersected with disability.
And – along the way – I learned so much about this country that I thought I knew.
Some of what I learned made me proud. And some of what I learned made me outraged.
I was and am proud of everything that Australians with disability achieve every day in every part of this country.
And I was and am outraged by the systemic failures that keep Australians with disability from achieving more.
Over the past sixteen years, I have looked for ways to fix systemic failures and remove systemic barriers.
And I want to take this opportunity to thank the Secretariat and Independent Review Panel members – Bruce Bonyhady, Lisa Paul, Judith Brewer, Kevin Cocks, Kirsten Deane, Dougie Herd, and Stephen King – for working so hard to find ways to fix those systemic failures.
This landmark report is a testament to your phenomenal work.
In closing, I want to read a long quote, written by Stella Young – the late, great disability activist – in the days after the 2013 launch of the NDIS.
This is what Stella wrote:
'While the NDIS is finally here … we are nowhere near living in a society that treats disabled people with dignity and respect. We're not even close.
‘… There are things the NDIS cannot do for us as Australians with disability. There are some barriers that we face in our lives that no amount of funding can address, like discrimination and prejudice. ‘Ramps won't start appearing where once there were stairs. Our libraries won't be filled with books in alternative formats. Negative attitudes towards people with disability won't magically be replaced with acceptance and respect.
‘We have miles to go before we sleep.’
I know exactly what you meant, Stella.
That’s why I want a more human, less bureaucratic NDIS.
That’s why I want to evict those who line their own pockets at the expense of participants.
That’s why I am determined to finish the job.
