A ‘Magic Pudding’ dilemma

- Hi, folks, well, we're about to get going, which is awesome.

Welcome, everybody.

We've got quite a few people here in person and I'm very thankful for that.

And we've also got a heap of people online, some panel members online as well.

This is awesome.

It's fantastic to be in this beautiful land.

And we're on the lands of the Awabakal and Worimi folks, and it's my great privilege to start our important meeting here by introducing Auntie Cheryl and Uncle Ray who are going to give us a welcome to their country.

And we are very privileged to be on your country. So come on down, Auntie Cheryl and Uncle Ray. (audience applauding) 

- Thank you Lisa.

It's wonderful to be here. And thank you Bruce and everyone else who's here today.

I'd like to... (speaking in foreign language) We stand on this beautiful land, the Awabakal and Worimi and Mindaribba people that are traditionally owned and connected to this beautiful land that we all stand on today.

And also our elders past and present that hand down song, story and dance for generations and generations to come. And regardless of race, colour, or creed, or denominational backgrounds you come from, we're all one.

We walk this land together, spiritually connected to this land, each and every one of us. Closing those gaps, building relationships and networking with each and every one of us.

I'm going to sing a welcoming song that I wrote many years ago, and as a little girl sitting around listening to my grandparents and parents and the stories they told, and also their lifestyles and their beliefs. That walking this land together hand in hand, with all people.

It's called, "It's Time To Come Together." (guitar playing "It's Time To Come Together")

It is time to come together It's time to put things aside Its time to become one people

And join our spirits with pride Listen to the dream time Listen to the old one's say We are from the dust And molded from the clay Be proud of who you are

And hold your heads up high Look to the sky Try not to cry  Oh be proud of who you are And hold your heads up high Look to the sky And try not to cry  Try not to cry Try not to cry Mmm  

Listen to the wind Hear the words go by The voices of our people  Saying one spirit One body  One mind Join the sacred land That (indistinct)  To each aboriginal man  

It's time to come together Walking hand in hand Be proud of who you are 

And hold your heads up high Look to the sky Try not to cry  Oh be proud of who you are  

And hold your heads up high Look to the sky And try not to cry  Try not to cry Try not to cry  (speaking in foreign language) 

- Welcome, welcome. (audience applauding and cheering) 

Thank you, have a wonderful meeting. And may it be fruitful, thank you.

- Thank you. 

- Thank you, Lisa. Thank you.

- That was awesome.

- You're welcome.

- Thank you.

- Thank you.

- Thank you.

- Wow, I can't imagine a better welcome. Can you? Can we just give them another hand, 'cause that was awesome. (audience applauding) - Thank you.

- Thank you.

That is one of the best welcomes to country ever, guys. Just letting you know. (laughing) Thank you.

And how appropriate that it's here, one of the first trial sites, right? So my name's Lisa Paul. I forgot to introduce myself before, but that's okay. My name is Lisa Paul and I'm one of the co-chairs of the Independent Review of the NDIS with the wonderful professor Bruce Bonyhady, whom I'm sure almost all of you would know well.

Thank you so much, Annie Cheryl and Uncle Ray, that was a really beautiful welcome to country. And welcome everybody to this gorgeous country.

We've got plenty of people online as well.

And I certainly want also to acknowledge all the people with disability who are here today and their families and supporters and loved ones.

And all the people online also with disability. So thank you to all of you for coming here today.

We've got the captions and the fabulous Auslan interpreters.

I always like to say the fabulous Auslan Interpreters 'cause then they have to do that. (audience laughing) And I also wanna introduce you to all of the...

In fact I can do it any number of times, you know, you could just keep repeating it. Fabulous Auslan interpreter.

I want to introduce you to the panel members.

So first of all, of course Bruce, everyone knows Bruce. He is one of the key architects of the NDIS. Actually, without Bruce we wouldn't have an NDIS. And it's just been such a privilege to work with Professor Bruce Bonyhady as a co-chair of this very important review.

And we've also got Professor Kirsten Deane next to Bruce, who's another panel member.

So Bruce, as you probably know, has got sons with disability. And Kirsten's got a daughter with disability, and bring such a perfect perspective.

Kirsten, of course you'd know as leading the Every Australian Counts campaign, which was the grassroots campaign that helped get up the NDIS. So without that work too, there wouldn't be a scheme. And then we've got some panel members online, so...

Oh, where do they come up? Well, we do have them online. I can see them. We've got… I dunno that you can see them. 

Dr Stephen King, give us a wave. He's one of the panel. He's a productivity commissioner. So I am afraid to own up to the fact that he's an economist. But actually that's quite important for the review as well. 

And we've got Dougie Herd here, give us a wave. Dougie lives with disability, is a CEO of a provider and has been a tireless advocate for people with disability. 

And Judy Brewer is online as well. Judy has an adult son with disability and also has been a tireless campaigner, particularly for people with autism, autistic people. 

Amazing, these are amazing panel members.

And we've got one panel member missing and that's Kevin Cox, who also lives with disability and was the human rights commissioner in Queensland. Very important man and continues to offer us this incredibly strong human rights perspective, which is where he comes from in his heart. And so that's been absolutely ideal for us. But he's not able to join us today. 

And we've also got members of our fabulous secretariat. So we're very well supported as a review.

Da-da. There's a few of them over there. There's one there. They're around and they can help you with any issues you might have. 

They're based in the Department of Prime Minister and Cabinet in Canberra. And that's a really important thing too. It's a very high status and a high caliber secretariat.

A bit of housekeeping for those in the room.

The women's bathrooms are just there. Men's bathrooms are on the other side. Accessible bathrooms are out in the foyer and down a bit of a corridor.

We've got the Auslan interpreters, we've got the live captions. For those in the room though, there is a hearing loop on the wooden floor and if you want to use it, activate the T coil in your hearing aid.

And if you need anything more, just find someone from the secretariat.

This is being recorded. The session is being recorded because it will go up on our NDIS review website. 

And we've also got media here. Would they like to out themselves? There's a few journos.

I think there's one right up the back. Oh, very shy. Can't be shy as a journo.

Got Celina from the ABC, and I think we might have someone else, but they're not going to ask questions in this session.

'Cause this is your session.

They might talk to some of you afterwards and we're very grateful for them being here. So welcome to you too.

It's no accident that the review is here in Newcastle. The Newcastle Hunter region was of course one of the first nought to 65 trial sites along with Geelong. And you know, this has been a hub for NDIS since the 1st of July, 2013, from the very beginnings.

One of the strengths and differences of this review is that it's actually based on lived experience from people with disability.

So, so far we've heard from thousands of people, we've received more than 2,500 which fortunately our secretariat can work through, as we can too.

And you know, all those things have told us the things that you want to tell us about the good, the bad, and the ugly with the scheme.

And we just have to make it be the scheme that we always imagined it to be.

And it's not quite there as Bruce will talk about.

So without further ado, I'd actually like to introduce Bruce and welcome you up here.

And come up and give us your views, which are very important and give a milestone about our views in the review.

Thank you.

(audience applauding) He's a lot taller than me.

- Lisa, thank you very much for that very warm introduction. I would like to acknowledge the traditional owners of the land on which we are gathered and pay my respects to their elders, past, present, and emerging. 

I'd also like to acknowledge Kurt Fearnley, chair of the NDIA board. It's great, Kurt, to have you here today. 

It's wonderful to be back in Newcastle, the lands of the Awabakal and Worimi peoples.

It's wonderful because this is where the National Disability Insurance Scheme began.

This is where the Australian people started the work that has changed the trajectory of the lives of hundreds of thousands of their fellow citizens.

This is where people with disability, families, carers, and disability service providers came together, standing on the shoulders of those who came before us and commenced a new generational effort to make the Australian way of life more accessible and inclusive for people with disability.

This is where, then Prime Minister, Kevin Rudd, came on the 1st of July, 2013, to kick off the national rollout of the NDIS. This is the place right here. It's easy to forget how far we've come since July, 2013. 

In a decade, disability has gone from an issue on the margins, to one of the core policy areas for commonwealth, state, and territory governments.

In that time, the NDIS has gone from a grassroots idea, born outside Canberra, to a portfolio with its own cabinet minister.

It has gone from zero to more than 6 And the lives of those Australians and their families have been forever and overwhelmingly changed for the better.

There is nothing like the NDIS anywhere else in the world.

It is unique. It is changing, for the better, the lives of hundreds of thousands of people with disability and the best is yet to come.

We're yet to see the full payoff from our investment in the NDIS, because the national rollout of the scheme began in July, 2013 and only finished in July, 2020.

That means we're barely three years into an investment designed to deliver social and economic benefits over the lifetime of a participant and to the broader community.

Of course, this generation of adults with disabilities are already benefiting from the NDIS, but those benefits will be multiplied when this generation of children with disabilities reach adulthood.

Such is the nature of generational reform. There is a time lag between the investment and the payoff. Right now, we're in a time lag.

Individually, the NDIS is opening doors for people with disability and their families, and is making our country stronger and fairer.

But nationally, the magnitude of those benefits are yet to be seen. 

That is why in the meantime, we share a responsibility.

The NDIS is a policy miracle and we have a responsibility to protect that miracle, maximize its impact, and make sure it works for generations to come.

All of which begs a series of questions. Where is the NDIS going? Are we happy with its direction or do we need to change? I've asked those questions a hundred different ways since the NDIS Minister Bill Shorten asked me to co-chair the NDIS panel with Lisa Paul.

And I have not liked all the answers I have found, and that is what I want to talk to you about today.

Since the NDIS review began last October, the independent review panel members have visited every state and territory multiple times.

We've engaged directly with people with disability, families, carers, and service providers.

We've travelled from Darwin to Alice Springs, via Maningrida, Groote Eylandt, Tenant Creek, and Ali Curung where the NDIS commenced in the Northern Territory eight years ago.

We have met with many thousands of people and we've received more than two and a half thousand submissions from participants, their families and those that support them, which contain rich experience and thoughtful feedback.

The most significant thing we've heard is how the NDIS has transformed hundreds of thousands of lives.

We've heard about people getting the supports they need for the first time, and how the NDIS has helped them develop new skills and get jobs or volunteer.

We've also heard about parents being able to rejoin the workforce and rebuild careers.

However, at the same time, we've heard how the NDIS has caused stress and fear.

We've heard that not everyone who needs the NDIS is getting the help they need.

We've seen and heard how, in some cases, the NDIS has not driven inclusion, but instead has driven segregation.

And we've seen how the NDIS market and competition are not delivering for people with disability.

And in the worst cases are leading to abuse and exploitation.

At the end of June, we put all that we had seen and heard and learned into a report we entitled "What We Have Heard." We could not have written that report with all its insights without you.

I want to thank everyone for your deep engagement with and support for the review.

Thank you for your trust, confidence, and ideas.

We have taken your insights and come up with five key challenges we think the NDIS faces.

They are, it is an oasis in the desert for people with disability.

It's fundamental purpose, delivering reasonable and necessary supports has become unbounded, and therefore some service demands and types are increasingly unreasonable and or unnecessary.

It supports far more children than projected.

Its markets are not working and as a consequence, its sustainability is being questioned.

Most of these challenges were already known. They've been identified many times, going back to the productivity commission report on NDIS costs in 2017, numerous joint standing committee reports and the tune review, yet not much of significance changed.

Knowing all that the panel has come to two major conclusions.

Our first conclusion is that the NDIS is, as I said, uniquely Australian and a policy miracle.

Against the odds it came into being, against the odds it survived, against the odds it changed for the better the lives of hundreds of thousands of Australians.

It is one of the great achievements of our federation and a breathtaking demonstration of the decency and fairness of the Australian people.

Our second conclusion is more sobering. To protect the miracle that is the NDIS, we must commit to real and enduring change. Let me repeat myself. Real and enduring change.

Not marginal change, a real change to the operation of the NDIS and the ecosystem of supports and services that are supposed to complement it. I realize that this statement will raise hopes and fears. Hopes that the NDIS will change for the better, fears, that after a decade of disruption we face more change.

Speaking as a parent, I understand both sentiments, especially the fear. But believe me, change is necessary. Real change is necessary, because based on what you have told us, the NDIS is not working for everyone.

It's too inequitable, over-delivering for some, under-delivering for many, and not delivering at all to the majority of Australians with disability.

What is even more worrying than the inequity is the air of unreality that exists around the NDIS.

Let me put it this way. We must stop thinking of the NDIS as though it is a limitless magic pudding.

What has become clear is that often without intending to governments, service providers and some people with disability in their families, have all started to treat the NDIS as a limitless resource.

Ironically, governments, while funding the NDIS and worrying about its increasing costs, keep helping themselves to new slices of the NDIS, rather than in an era of tight budgets delivering universally accessible services, in areas such as health, early childhood, education, housing, and transport, governments often expect the NDIS to do more.

Disability service providers also want more, not to mention the examples of fraud and unethical practices. Meanwhile, packages for many participants keep growing.

Some packages increase due to changed circumstances, some due to a lack of clarity about what is reasonable and necessary, and some because participants are worried about losing the support they rely on.

As I said, we have all started to treat the NDIS as a magic pudding, but the NDIS is not limitless, and we all need to stay within the bounds of those limits.

That is why we need to change. We all have a part to play in these changes. Participants, families, providers, and governments. The review is speaking to governments, and I will be speaking to providers later this afternoon.

This morning though I want to explain what these changes mean for people with disability, their families, and their carers. Let me begin by discussing the NDIS oasis in the desert problem.

In its 2011 report, the productivity commission envisaged the NDIS working in tiers.

Tier one covered all Australians.

Tier two covered people with disability, who do not need an individualized support package, roughly one in five Australians.

Tier three covered people with permanent and significant disabilities who required individualized support, roughly one in 50 Australians.

All governments through Australia's disability strategy or ADS, promised to create inclusive and accessible communities, for the one in five Australians with disability.

That meant mainstream services such as early childhood, health, education and housing would become accessible to all Australians with disability.

But that promise was only backed with insufficient funding.

And as a consequence, many mainstream services remain unavailable or inaccessible.

We've also seen the loss of general disability supports and cuts to long-term funding for mission-driven disability organizations.

As well as the sidelining of the information linkages and capacity building program and local area coordinators, both of which were meant to build community capacity and community supports.

That means if you are a person with a disability without an individualized package, you're effectively on your own. No wonder the NDIS is under immense pressure.

In response, the review is considering two key recommendations.

First, we're considering abolishing tiers one, two, and three, the approach envisaged by the productivity commission, because that approach prioritizes delivery of individualized support to the minority of people with disability, who are NDIS participants.

That focus on implementing individualized funding made sense during the rollout of the NDIS.

Now that the NDIS is rolled out, we believe that there is a need to prioritize the delivery of universal or foundational supports to the majority of people with disability, and to create a joined up system, rather than one which is divided into tiers.

Foundational supports available to all Australians with disability would include such things as information and peer support.

And for a smaller number of people, there would be support, such as assistance with shopping, cooking, and cleaning.

In addition, we want to see much better support for children with emerging developmental concerns and delay, through maternal and child welfare centres, integrated child and family centres, and early childhood education.

Individualized supports, through the NDIS, should be built in a graduated way on top of those foundational supports, creating a more equitable and sustainable system.

In order to give confidence to the disability community and to reinforce the links between the Australian disability strategy, the NDIS and a commitment to delivering foundational supports, the panel believes that there should be a single intergovernmental agreement drawing these policies together, and, if needed, holding governments to account.

The second challenge you help us to identify is the need to clarify what is meant by reasonable and necessary supports at times reasonable and necessary has been interpreted very differently by the NDIA without any changes in the legislation, rules or operating guidelines.

In addition, decisions on supports have been unfair and inconsistent, with some participants receiving much more support than other participants with similar needs.

What you've told us is that you want fairness, transparency, and certainty around the definition of reasonable and necessary supports.

The panel agrees on the need for greater fairness, transparency, and certainty.

That's why we're considering three important changes.

First, we're considering how budgets are put together for participants.

Currently, those budgets are constructed line by line, item by item, leading to endless arguments and lots of wasted time and money providing reports. This was never the intention of the NDIS.

It was designed to provide an overall budget that is reasonable and necessary, then give participants control and choice over how they spend their budget.

The combination of line by line planning and participant demands for control and choice have blurred the definition of reasonable and necessary supports.

It's not producing a good experience for participants, or good outcomes, and it's contributing to financial pressure on the NDIS.

The panel's emerging view is that reasonable and necessary support should be set at an overall package level rather than line by line.

The second change we're considering is how reasonable and necessary supports are decided.

Currently, the process of determining reasonable and necessary supports starts with assessing functional impairments.

This medical approach misses the point of the NDIS, which is to deliver people with disabilities the supports they need to undertake daily activities and participate in the community.

Funding should therefore be determined by the supports people need to actively participate in the community, their goals as well as their environment. Things like their living arrangements should also be taken into account.

The third change we're considering, is whether rather than being outsourced to local area coordinators, the NDIA should determine what is reasonable and necessary.

Under this approach, the agency would also be responsible for commissioning and paying for expert reports when needed.

Of course, this change would have flow on effects for the NDIA, in terms of skills, experience, staffing, and culture. That's why I'm glad there has been a down payment on increasing the capacity of the agency's workforce in the recent budget.

Finally, the panel's emerging view is that combining planning and budget setting contributes to the stressful relationship between participants and their families and the NDIA.

That's why the panel is considering whether planning should occur after participants budgets are determined.

We think that this change would be a less stressful experience and give participants more help and flexibility in using their funding to meet their needs.

A third challenge relates to early childhood. This is an area that needs a complete and urgent rethink. 

First, based on the nationally consistently collected dataset, 20% of children experience learning difficulties, developmental concerns, developmental delay, or are found to have disabilities.

In other words, learning difficulties and disability are mainstream issues. This is why we're emphasizing the needs of children as part of our proposed reforms to foundational supports.

Second, we want children with developmental concerns and delays to be identified as early as possible in mainstream settings, through vaccinations and other checkups.

Third, early intervention needs to be based on best practice evidence and principles, needs to be built around a key worker. And unless there is a need for clinical intervention, needs to be delivered mainly in homes, early childhood settings and schools. We want children and their families to have every opportunity to lead ordinary lives, included in their local communities.

Finally, the panel is of the view that there also needs to be much better support for families.

In conclusion, let me leave you with three thoughts.

First, progress has and is being made. The last federal budget made significant investments to build the capacity of the NDIA, as well as prevent fraud. In addition, the number of appeals to the Administrative Appeals Tribunal have been significantly cut, and hospital discharge rates have been significantly improved. And for the first time, 50% of the members of the NDIA board are people with disability. 

The challenge ahead is to keep pushing for progress.

Second, I deeply understand that every person with disability, their families and carers crave certainty. As a result, any changes that flow from this review should be carefully staged and clearly communicated. Careful and effective implementation and monitoring, which centres the voices of people with disability and their families will be essential. 

Third, and this is the most profound point, the NDIS does not belong solely to us. Yes, we fought for it. Yes, we protected it. Yes, we depend on it. But the NDIS does not just belong to us. It also belongs to the generations that follow us.

We are all, and by that I mean people with disability, families, carers and providers, custodians of the NDIS.

With rights come responsibilities.

And we have a responsibility if we want to live up to our promise to make every Australian count. To maximize the social and economic benefits of the miracle that is the NDIS. Every person with disability, every family member, every carer, every service provider, and all governments have a role to play in this change.

It was a united disability sector which gave Australia the NDIS. Now more than ever, we need to remain united and determined. Then, and only then will the future of the NDIS be secure in a form which matches our hopes and dreams of a decade ago.

Thank you very much. (audience applauding) 

- Wow.

Honestly, there's no one better to be co-chairing a review of the NDIS than Bruce. You know, we're so lucky. Oh, hang on, I'm a short person. We're so lucky to have Bruce leading this review. And to have Bruce be the person he is who fought so hard for the NDIS, and will continue to fight so hard for the NDIS. And to set it up for a long, long, long future.

Now we're gonna do questions.

Thank you so much, Bruce. That was just fantastic. He's already getting questions on his phone, I can tell.

So we're gonna go turn in turn in the room and online because this is a hybrid gig today.

Questions can be asked here in the room, raise your hand we'll bring the microphone to you. You can also ask a question via our online tool, Slido, by scanning the QR code. You can go to www.slido.com and enter the NDIS review. And no doubt the people online are already there and I'm going to go kind of round the panel to answer them.

And I also want to just give a big shout out to Kurt Fearnley, hiding obscurely in the back of the room here. A Newcastle legend, a national treasure, a true hero, an Olympian, and just an incredibly beautiful person, who I feel very privileged to now know. And the chair of the NDIA. So thank you so much for coming along today, Kurt, really appreciate it. (audience applauding) 

Okay, so I'm gonna start online and I'm going to go first to Kirsten to answer a question.

How can the NDIS change to make it easier to find what I need to know? It's pretty hard and confusing and stressful.

- Thanks Lisa.

Are we on? Okay, great.

Great question.

And very consistent feedback that we've had all through the life of the review.

And also I have to say with my old Every Australian Counts hat on, something that I reckon we heard would be in the top 10 things that Every Australian Counts used to hear, was how confusing and how hard it is to get good, clear, consistent information.

So heard it before, it's been part of all of the previous reviews and inquiries into the NDIS and we've heard it really, really strongly, when we've talked to folks with disability, and their family members through the life of this review.

So what will we do about that? Couple of things.

We're certainly thinking about the different types of information that people need, not just about NDIS services, but about other things that people might need in the community.

So it's not always a focus on services, but it's how can I get more involved in my community? How can I do stuff? So we're thinking about that.

We're also thinking about where you get the information.

So we are thinking about the types of information, but also where you might get the information.

And the reason that's important is that we've heard really strongly from people with disability and their families that they wanna get that information from folks that they trust.

And that might come through peer support groups, that might come through disability representative groups.

So it's not just the types of information, but who gives it to you and how it is easier to find, if it comes from folks that you trust.

So there are a couple of the things that we're kind of grappling with at the moment.

- Thank you, Kirsten.

Do we have any questions on the floor? Yep.

So just say who you are and where you're from.

- [Dave] Yep, thanks.

Dave Belcher with Community Disability Alliance Hunter.

Just a question around that budgets first planning second proposal. So we're just after a bit more of elaboration on that, like how will that work? And just a bit of clarification how that is similar or different to the independent assessments that were initially proposed? - Sure, thanks.

Absolutely, we're so focused on that, as you can imagine. 

Bruce, do you wanna take that one? - [Bruce] I didn't quite hear the question.

- Second one.

Okay.

So, elaborate on the splitting budgets from planning, and how will that be different to independent assessments? - [Bruce] Sorry, difference between budgets and- - Budgets and planning.

- Yeah.

- And how will that be different to independent assessments? Which of course were a shocker.

- [Bruce] Okay.

- [Lisa] To use the technical term.

- Good question, okay.

So I think what we're really thinking about is what we've heard from people, you know, as part of this review. And the thing that has come through really loudly and clearly is that the line by line approach to planning is a source of enormous stress and concern. As participants are not sure what information they need to provide in order to justify those particular items. And they therefore produce more and more information. And many times we've heard that information is ignored by the agency. It's also counter to the way the scheme was designed.

The scheme was always intended to provide people with a total reasonable and necessary budget, based on three things. Their support needs, which of course arise from their functional impairments, their activities and goals, and also their environment and their living arrangements. In other words, aligning with the international classification of function, which is the underpinnings to the NDIS.

So we think there is a better way to get to those total support needs than doing it line by line, which will be less stressful, will be fairer. Because one of the things we've heard is that some people are able to afford to provide commission reports, while others can't. And so we're trying to create a system that will be fairer, more consistent, but ultimately valid. The problem with independent assessments was there was no indication that it was ever gonna produce a valid result.

We also think that it's really important that the processes that are developed here are transparent. So again, unlike with independent assessments, which was a black box, we think there needs to be a transparent process here that enables people to understand the way their budget was put together, but then having set that budget, enables them to go out and then spend that budget to meet their needs.

Because the reality is, two people with the same budget may have very different support needs and they need that individual flexibility. So we think it will be a more flexible approach, a more transparent approach, and a fairer approach than what we have now.

Everyone has told us that the current planning process is not working. And so if we can separate the budget setting from then the planning, then we think it will be much better. Some people will need a very abbreviated plan, if you like. 'Cause they'll have a high degree of certainty about what they want to get on and do.  Whereas for other people it will take a lot more planning to get that, you know, in order to set up the budget to be spent in the best way for them.

- And I think, you know, the thing that'll be completely different to independent assessments is of course that people with disability will be at the center of it.

Without doubt. You know, in design and in testing and talking and the whole lot.

I'll go online now and I've got a question for Judy. "I'm a parent of a young child with disability, what does this mean for me?" 

- Oh gosh, what a good question.

And it's a question I probably would've been asking if I was sitting in the audience not on the screen. If we do our job properly, this review will mean a better life for you, or your loved ones. And a better community, because we will have a more inclusive society. It's a big aim and we have taken this very seriously.

For me being on this review panel comes from being a parent of an autistic man, who's turns 30 this year, who was once an autistic child. And I would never want anyone to go through what we have been through in those 30 years, in giving him the life that he wanted and now has. So we have come...

The scheme, the NDIS is a scheme that has the chance to reform and transform lives. But it's only a part of the equation. So many of our families need more than that.

They need the education system reformed, they need the health system reformed, they need housing, they need mental health, they need understanding, they need inclusion, they need acceptance. It's a very big aim.

So the review's job is to get the NDIS right, and to explain that we need more than the NDIS, for the NDIS to work. So I hope we are delivering that for you. And I wish you all the very best. I know you'll have an... Your child will be not only an awesome child, but one day an awesome adult like my son.

- Thank you so much, Judy. We've learned so much from Judy being on the panel. It's been fantastic. 

Is there another one in the room? Yep.

The microphone will come to you. Remember to tell us who you are, where you're from. I know the answer to that, but some might not.

- My name's Sue French from Early Links Inclusion Support. Just to follow on the early childhood question, Bruce, you spoke about best practice and I applaud that. That is everything we wanted to hear. We want best practice, we want to see children out and about in their communities thriving. But the way that the planning is set up at the moment, it's not happening.

How is the review going to influence the way that services are delivered in that best practice model? How do we go back to the key worker approach? 

- It's a really good question. As you point out, the NDIS has not led to the outcomes that we hoped for children. And I think, you know, just speaking personally, it's sort of one of the great disappointments, that this is an example where what we've done, there's been an enormous gap between what we've done and what we've known is best.

And so we need to adjust a whole lot of things in order to ensure that we now get back to and do better than we did before, in terms of early childhood. And so it does start where I talked about in the speech with foundational supports, that we want children to be welcome and supported in their communities.

So how can we make sure that normal developmental checks for children, vaccinations, also include a developmental check.  So that we identify developmental concerns and delay as early as possible, when the these kids' brains are as plastic as possible.

And then start to support not just the child, but the family in those natural settings, with initially advice and guidance and support through playgroups.

Where these families can also mix and meet with other families and share their experiences. Because as Kirsten said, you know, people want advice from other families, from people they know and trust. And so I think the first step is making all of these settings much more inclusive, including early childhood education settings, which, you know, today don't welcome children with disabilities. And as I said, the second bit is all about supporting the families, because we know that children thrive in families that are well supported. And then I think the third element is putting into practice what we know is best, which is a key worker model, working with the child, working with the family, working with that early childhood setting, to make those settings as an inclusive as possible, And to build therapy, you know, into daily routines, rather than restricting it to intensive clinical sessions, which are not located in community. 

So another way of putting it is to say, we need to move from a medical model back to the social model that we all know is the right model. Now this will require an enormous change. There'll be significant workforce issues, there'll be real issues explaining to people why this is actually better. But the evidence is there that this is better. 

And so there is a communication issue to be... Very important communication to be had so that people really understand that this is about a better system for children and their families. And one which is ultimately more effective, fairer. Because also, you know, we don't necessarily think it's...

You know, at the moment all the incentives are to join the NDIS and then to have a medical approach. We don't need that distinction. It's not right that children are now missing out until they get into the NDIS. So this is an area of major, major reform, but one which we believe will have a benefit for generations to come.

- Thank you so much Bruce, and thank you Sue for the question.

And thanks for the great chat you and I had before, and what you do in terms of family therapy. And going into people's homes, which is so ideal for supporting young kids. And we wanna see more of that, as some of what we're talking about is about getting more and more of that available in the community.

I think we've probably only got time for one more question. We'll see how we go.

But I'm gonna throw to Dougie, who's joining us online today. And the next question is for you.

"What improvements and initiatives have been considered for those living with a disability who reside in rural and remote areas where supports are lacking?" 

- Thank you. I live in Canberra, which is itself somewhat remote, but not as remote as many of the communities to which our review panel members and secretariat have visited to listen to what people have told us.

We talk about thin markets, we talk about distance that makes it impossible for people to get their plans, get them mobilized, and get the supports that we need. So we need to do a variety of things.

Think about what does it mean to be a person with disability living in a community that may be a long way away from the kinds of services that are available in the heart of Sydney, or Melbourne, or Brisbane, or Perth.

How do we ensure that those communities are given the resilience to assist themselves to make life better? How can we make sure that people have access to choice, and control over services and supports that may seem distant? And that can't be done in all circumstances, in all places, and for all peoples using the same sort of model, as I might have here in Canberra, or used to have up in Sydney.

We need to listen to the organizations of Australia's first peoples, about how they and their communities need to be given real control over the ways in which their services are developed and extended and built into the future.

We need to listen to what local communities tell us about their needs and how they are different from those of the big cities. And to put in place different methods of providing supports and services that will work for them.

Whilst enshrining at the same time, the same rights, choice and control that anyone has, wherever they may live, whoever they may be, whatever their disabling condition might be.

These are challenging, challenging problems for us to nut out together. And that's why we are still inviting people to give us their solutions to contribute to thinking through the best way forward.

And to make sure that wherever you live, whoever you are, whatever your disability may be, there will be an NDIS and foundational support in your place where you need it, when you need it, delivered to you with your consent, in the way that you want it to be.

I hope that gives us some idea of the complexity of the problem, but also our commitment to solving it together.

- Thanks Dougie. And I think Bruce might wanna add.

- Yeah. I'd just like to add to what Dougie said.

One of the things that the review has done is it travelled from Darwin to Alice Springs, via Maningrida, Groote Eylandt, Tenant Creek, and Ali Curung. And Ali Curung was a place I visited eight years ago when the NDIS started in the territory. 

And the shock for me was that nothing had changed for the people of Ali Curung. 

So one of the great inequities now, is the way the NDIS is not serving those remote indigenous communities.

And we owe it to the people in those communities to make the NDIS available there. That's why the panel has recommended alternative commissioning approaches, where those communities would come together and commission services that meet their needs.

But it's not just in those remote communities that we've got inequities. If you go to parts of Victoria, to East Gippsland, utilization of plans is less than 50%. So we need to make the NDIS fairer, it's a key part of our recommendations.

As I said in the speech, some people are getting more than they need, and some people are getting much less than they need. This scheme was always designed and intended to be fair. And so ensuring the equity of the scheme is one of the key focuses for our review. Thanks Lisa.

- Thank you Bruce. And thank you everyone. Thank you to everyone who's come along today. Very much appreciate it. Hope we've just given you a bit of a slice of our work.

Thank you to everyone online. Thank you to the all of our panel members who are here. And please enjoy a cup of tea, coffee as you go out. And I see there's a bit of food left, so that's always good too.

The recording of this will go up on our website, which is 'ndisreview.gov.au'. But also because you've asked a lot more questions on Slido than we could get through, obviously, we will try to come out, not so much to every question, but try to come out with the themes. Give you a sense of our answers to the questions in a thematic way.

So thank you very much. 

Thank you. (audience applauding)