Gill Shaw - Good morning, everybody. Welcome, we are right on time, I think so we are good to go, aren't we? Okay. So good morning everyone, my name is Gillian Shaw. I will be your MC for today for this very important NDIS Review community event. The NDIS review panel is delighted to be here in Geelong today, both in person and online. I do have some housekeeping matters to go through first and then we'll get things underway. So firstly, as some of you may be aware, there was an outage in Geelong today from Telstra. We do hope everything's working well now, so apologies from us if any inconveniences caused, particularly for those online joining us today. For those in the room, ladies bathrooms are to the left of the stage and gents to the right. Accessible bathrooms are across the foyer and down a little corridor. Follow the signs, accessibility, we have virtual Auslan interpreters and live captions on the screens. Hopefully the Auslan, lovely Auslan interpreters, lovely Auslan interpreters. We also have the live captions and for those in the room, we also have a hearing loop. So if you'd like to use it, activate your T coil in your hearing aid. If you need anything further today, please reach out to our friendly secretariat staff that are around the room. So I will now get things underway by introducing our Wadawurrung elders. I'd like to start by introducing Ash and Michael. So thank you for joining us today who are gonna deliver a welcome to this beautiful country, the lands of the Wadawurrung people.
The National Disability Insurance Scheme Review Secretariat acknowledges the traditional owners and custodians of country throughout Australia and acknowledges their continuing connection to land, water and community. We pay our respects to the people, the cultures and the elders past, present and emerging.
Gill Shaw - So we'll proceed with introducing the panel to you now. But firstly, just another thanks from us and we have a number of people attending in the room today. We hope you enjoyed your morning tea. Were able to grab something nice to eat and have a cuppa. Sorry for those online. We weren't able to send you some goodies to your home, but hopefully you were able to have a cup of tea this morning too. So we do have a number of people joining us online as well. So we are here today with the panel so they can share with you their progress in the work they've been doing and particularly the key reforms that they are thinking about and developing. There are seven panel members on the independent NDIS review panel. They all bring with them a long, long history of experience and expertise to this important work. Many of the panel members also have a lived experience of disability or have family members with disability.
It gives me great pleasure to firstly introduce you to our co-chairs, Lisa Paul and Professor Bruce Bonyhady. Bruce of course, is well known to so many of you. Bruce fought hard to set up the NDIS and is playing an equally key role in the work of the review in ensuring the NDIS works the way we all need it to into the future. Bruce has two adult sons with disability and he was the first chair of the board of the NDIS, a position now held by Kurt Fearnley. Lisa, our other co-chair is a very experienced and well-respected former senior public servant with a distinguished career including a secretary to the Department of Education for a decade and has served many roles such as the chair of Headspace. Other panel members joining you today include Professor Kirsten Deane who many of you may recognise from her work leading the Every Australian Counts campaign, the highly successful grassroots Community campaign, which paved the way for legislation and the establishment of the NDIS. Kirsten has a young adult daughter with disability. Dougie Herd also joins us today and he brings his professional expertise, lived experience of disability and his passion for advocacy. Dr. Stephen King joins us online today. Stephen brings the review a strong economic perspective and experience as a productivity commissioner. Judy Brewer also joins us online today. Judy has an extraordinary level of professional and personal experience in the disability sector, particularly with the autism community. Judy has an adult son with disability. Our Queensland based panel member, Kevin Cox, is unfortunately unable to join us today. Kevin is a former Queensland Human rights commissioner who brings a strong human rights perspective to the work of the review and also with us today are members of the NDIS review secretariat team, which is based in the Department of Prime Minister and Cabinet in Canberra. And although some of our guys are located in Canberra, we are also scattered all across Australia. This is the team who set up this and many other events who are here to help you today, ask questions of the panel and provide any other support you may require. So, as I said before, the NDIS's panel will share with you highlights of the work they have done so far and their next steps as they move towards the final stages of the review of the NDIS. I will soon ask Lisa Paul as co-chair to make some opening remarks. We will then move on to the keynote address by Bruce. Once Bruce has finished his speech today, we'll then open up for a question and answer session. We'll be taking questions from the floor here today and also from online. So, without further ado, I will turn to Lisa Paul now to make some opening remarks from her location online. Thanks, Lisa.
Lisa Paul - Thank you so much, Gill. And I just wanted to say, how impressed I'm that everyone has taken the time to be in person in Geelong or online and I gather there's a lot of people online. I can't wait to hear Bruce speak and answer some questions, but I really just wanted to thank everybody for participating in today's event, which is a really important event and how perfect that it's being done in Geelong. So thanks, Gill.
Gill Shaw - Thank you very much, Lisa. Okay, so I'd now like to invite Bruce Bonyhady to the lectern here, welcome Bruce.
Bruce Bonyhady - Thanks very much, Gill.
I would like to acknowledge the traditional owners of the lands on which we are gathered, the Wadawurrung people and pay my respects to their elders past, present, and emerging.
And I would like to thank Ash and Michael for such a warm welcome to their country.
I also want to extend that respect to any First Nations people joining us today.
I would also like to acknowledge that there are many familiar faces in this room.
Thank you for coming along today and thank you for everything that you have done to fight to establish the NDIS and are now doing to improve the scheme.
It's great to be back in Geelong, the home of the National Disability Insurance Scheme.
Before I start, I want to thank everyone who has made contributions in writing and in person to the NDIS review.
So far, the review has received more than 3000 submissions and we've engaged directly with thousands of people.
The overwhelming message from those engagements and submissions is the extraordinary positive change that the NDIS is making in the lives of people with disability and their families.
At the same time, we've received invaluable advice on how the NDIS and the ecosystem around it could be improved, and this is guiding the independent review panel as we finalise our recommendations.
Those recommendations will be made to disability ministers at the end of October.
With that deadline approaching, I want to take this opportunity to tell you some more about the panel's current thinking and answer your questions.
Before I talk about where the panel is up to, let me go back to where we started, last October, the NDIS Minister, the Honourable Bill Shorten, established the NDIS review to evaluate the design, operations and sustainability of the NDIS.
I was asked to co-chair the review with Lisa, who as you know, couldn't be here today but is with us online.
Minister Shorten gave the NDIS review three core tasks, find ways to improve the experiences of participants and families, find ways to ensure the NDIS is sustainable and find ways to restore trust in the scheme.
These core tasks, outcomes, sustainability, and trust are connected and must be considered jointly.
They're connected because the NDIS can't achieve sustainability without improving participant outcomes and because the NDIS cannot earn trust without delivering better outcomes.
Now I know people are worried about the review.
Some people, understandably are anxious about the future of the NDIS.
I also understand while everyone wants the scheme to work better, this also means that there will be more changes and changes always bring uncertainty.
As many of you know, two of my adult sons are participants in the scheme, so I understand the worry and the fear because I feel it at every planning meeting.
With that in mind, let me start by addressing those concerns.
The NDIS is here to stay.
It's not going anywhere.
That is what Minister Shorten has said.
That is what the treasurer has said and that is what the Prime Minister has said.
The federal budget backed up those words with a $910 million investment in the National Disability Insurance Agency's capacities, capabilities, and systems.
This is a very significant down payment from the Commonwealth government towards better outcomes and restoring trust. In addition, every government in Australia continues to back the NDIS.
My point, the promise of the NDIS is secure, but, and this is vital, that promise does not mean the work of the disability sector is done, because the onus is now on us to realise the full transformational benefits of the NDIS.
That means everyone in the disability sector shares a responsibility that is both an opportunity and a challenge.
An opportunity to take the vision that drove us all those years ago, a vision of human rights and inclusion, and see that vision realised in practise and a challenge to do that in a way that ensures the scheme is sustainable and continues to enjoy the high level of public support it has always enjoyed.
Let me unpack that challenge for you.
The national rollout of the scheme began in July, 2013 and only finished in July, 2020. That means we are only three years into a nation building project, designed to deliver social and economic benefits over the lifetime of each and every participant.
That's why according to the intergenerational report, future cost growth must be contained and the full benefits must be delivered.
Put it this way, the NDIS, once it reaches maturity will deliver social and economic dividends for generations. As I said, the initial rollout of the scheme was carried out between 2013 and 2020 and focused on getting participants into the scheme. That was the individualised stage of the NDIS build.
Going forward in the 2.0 version of the NDIS, we need to focus on the community wide stage of the build. What I mean by community wide stage, I mean that we should be inclusive and as a community we should care as much about people outside the NDIS as we do about those who are in the scheme.
Roughly one in five Australians live with disability, but only one in 50 Australians receive an individualised support package from the NDIS.
The vast majority of people with disability are not in the NDIS and never will be, because they do not need an individualised package to meet their needs or fully participate in the community if, attitudes change and mainstream services are accessible and inclusive of people with disability.
Every government in Australia, including local councils, agreed to make their mainstream services more accessible to the community before we started rolling out the NDIS to individuals.
This was set out in the first National Disability Strategy, which ran from 2010 to 2020, but more than a decade on the promised rollout of community-wide services and supports has barely started, because all governments prioritise the rollout of individualised NDIS supports.
The great challenge we now face is to finish the job by finishing the community wide rollout of disability supports, which were always intended to sit side by side with individualised NDIS supports.
There've been many different names for that community-wide rollout. It's been called tier two. It's been called ILC or Information Linkages and Capacity Building. As a panel, we've been thinking deeply about the concept too. We've decided to call 'em community-wide foundational supports because they are supports that should, by right, be available to all people with disability.
The panel's position is clear. We believe foundational support should include such things as information and peer support, and for a smaller number of adults should also include assistance with shopping, cooking, and cleaning.
We also believe that foundational supports must include much better support for children with emerging developmental concerns and delays, and those supports should be primarily delivered where children already are in existing services such as maternal and child health, integrated child and family centres, early childhood education and schools.
We believe that all children with emerging developmental concerns and delay must be supported in ways that best meet their needs.
For many children, foundational supports will best meet their needs. For other children, individualised supports will be needed on top of foundational supports.
Let me make the panel's position even clearer.
The review strongly believes that the fairness, trust and sustainability of the NDIS depends on the delivery of community-wide foundational supports to the one in five Australians with disability. In other words, the sustainability of the NDIS depends on foundational supports.
Foundational supports are fundamental and like preventative healthcare, the smartest investments governments can make.
Let me now move to the sustainability of the NDIS, which was the focus of a report released last week by Dr. Simon Duffy and Dr. Mark Brown in their report, Duffy and Brown argued that the costs of the NDIS need to be brought under control, otherwise the scheme will lose political and public support.
Duffy and Brown also said that sustainability is fundamental to the human rights of people with disability. I think that is an important insight. It's important because it means that those of us who champion disability rights should also champion sustainability. After all, a human right that cannot be sustained is a human right that in effect has been denied.
As I said, the NDIS is not going away, but the future of the NDIS and the realisation of its full promise is in all our hands and everyone has an important role to play.
As a movement, we have agency, we also have responsibility, all of which begs a question, how will we use our power? I firmly believe we must use our power to work together to improve the scheme.
In their report, Duffy and Brown also talk about the importance of people with disability in their families having a central role in the ongoing design and operation of the NDIS. I could not agree more. There has already been some positive change. For example, for the first time, people with disability are in the majority on the NDIA board.
That's a good start, but there is so much more to be done. We need to work together, including with the agency in a spirit of shared endeavour and responsibility to solve the current challenges. We may not agree on everything, but an open and respectful dialogue is essential.
One key issue to be resolved is clarifying the eligibility criteria for the NDIS.
The panel's view is that eligibility for the NDIS should be based first and foremost on significant functional impairment and need and only secondly on medical diagnosis. This was always a key design feature of the NDIS and it remains as important today as when the scheme was conceived.
The principle focus on functional impairments arising from one or more disabilities is important because it allows for multiple disabilities to be considered, which when taken together, result in significant functional impairments.
Another key issue we need to work together on is clarifying the definition of reasonable and necessary supports. I've said that an item by item approach to reasonable and necessary supports is not in line with the original intent of the scheme. This point has raised questions.
With that in mind, let me explain more about the review's thinking. The current approach to planning is clearly not working.
This is what you have told us.
People are trying to squeeze their lives into lines in the NDIS price guide, they spend precious time and money arguing with local area coordinators or the NDIA about what they need line by line. Instead of focusing on building connected and inclusive lives. This flawed approach is extremely stressful and leads to constant disputes.
Despite the name, it isn't really planning, it's a budget negotiation.
This was never what was intended.
The intention was that reasonable and necessary support should be set at a whole of budget level, allowing for people's individual needs and preferences to determine how a budget is spent.
That's why the panel thinks that in order to provide individualised, fair, consistent, sustainable, and certain funding for participants, based on transparent and valid processes, we need to separate the current planning process into three distinct steps.
The first step would be information gathering. The focus here would be on support needs rather than the price guide. What activities do you do? How much support do you need to undertake them, and how often do you need those supports? A suitably well-trained and qualified person would spend time gathering all this critical information from the participant and their family, as well as, where appropriate, professionals who work directly with the participant.
As part of this information gathering phase, there would be an assessment. The assessment would be personalised and comprehensive and focused on your support needs. There'll be three important sources of information, information from participants, information from the professionals in their lives and information from the needs assessment.
Unlike independent assessments, there would be no shortcuts because we know that this information gathering step is crucial to ensuring the budget is right. It would also be transparent and designed with the disability community.
The information from these sources will then all be combined using consistent and transparent processes to set an individualised budget. And because the budget is reasonable and necessary and has not been built line by line, people will have much more flexibility in how they use their funds.
Only big items like equipment and specialist disability accommodation and supported independent living will need to be used for a pre-agreed purpose.
The final step will be getting that budget off the page and into action.
Here we wanna make sure people have much more support to use the funds in a way that makes sense for them and gets them out in the community doing the things they choose to do.
We've heard loud and clear from many people that they want better support and advice, and so we're thinking about all the ways that help might be provided. We think that by separating out these three steps, the process will be fairer, clearer and more predictable, and therefore less adversarial and stressful. And the final step, getting budgets into actions will help everyone work more effectively together to get the best outcome for participants.
That's our current thinking, but as you can already see, there's a lot of design and implementation work that needs to be done to finalise exactly what each of these steps should look like.
I want to be clear, the detailed design and implementation work will not be done by the review and nor should it. The design and implementation work should be done by the agency or independently in conjunction with people with disability, their families, and their representative organisations.
That point is important, so let me repeat it. The review will not be the final word on eligibility and reasonable and necessary supports.
Rather, the review's work should create a platform for ongoing engagement and collaboration between the NDIA and disability stakeholders. The review will come up with a considered position, including a direction and clear recommendations.
Ultimately though the responsibility for these big decisions needs to be shared by governments, the disability sector, and the broader community.
I want to now come back to the review's final report.
As I said, we will deliver our recommendations to disability ministers at the end of October. It will then be up to Australia's governments, commonwealth, state, territory, and local to respond to those recommendations. At the moment, we're still carefully reading your submissions and finalising our recommendations.
There's still a lot of work to be done, but I do want to share 10 key areas the report will focus on.
The first big reform direction should come as no surprise given what I have already told you. The panel believes that community-wide foundational supports are non-negotiable. They must be rolled out nationally to secure the fairness, trust, and sustainability of the scheme.
Allied to this, mainstream services, health, education, housing must become universal services and meet their obligations to all people with disability.
At the same time, these systems and the NDIA must work much more closely so that the NDIS is not an island.
This will require a new intergovernmental agreement between the commonwealths and states and territories with responsibilities clearly set out through multilateral and bilateral agreements.
Our second big reform area relates to improving the participant experience, which is central to our terms of reference.
The scheme needs to become more person centred and respond better to intersectional disadvantage. For instance, we need to improve outcomes for participants from First Nations, including those living in remote communities and culturally and linguistically diverse backgrounds.
We also need to take gender into closer consideration and better understand and support participants with complex needs through initiatives such as supported decision making.
Our third big reform direction is access to the scheme.
The assessment of access to the scheme should be based primarily on significant functional impairments, not a purely medical or diagnostic approach.
Our fourth big reform direction is that the NDIS needs a clear, fair, and consistent definition of reasonable and necessary supports.
Our fifth big reform area relates to early childhood, children with developmental concerns and delays should be identified as early as possible in mainstream settings and early intervention needs to be based on best practise evidence and principles.
We wanna maximise the benefits of early intervention and give children and their families every opportunity to lead ordinary lives in their communities.
Our sixth big reform direction relates to home and living.
Reforms in this area need to focus on current and future housing needs. We're thinking about ways to ensure that decisions about housing and living are more consistent and provide more certainty to participants. There's also a need to better utilise staff while delivering more individualised solutions to participants.
Our seventh big reform area relates to intermediaries and the current confusion and gaps between support coordinators, local area coordinators, complex case managers, community connectors, and plan managers.
There's also confusion about whether these roles are agents of the participant or the scheme.
Our eighth big reform direction concerns the NDIS market.
The market is not delivering enough of the right supports in the right locations, let alone creating value or innovation. The panel believes that government needs to step in and steward the market. We also believe the participants need to have a greater say in how the market and services are shaped.
Our ninth big reform direction involves the workforce.
Here, the bottom line is the positive outcomes from the NDIS depend on a diverse, well-trained, engaged workforce working with people with disability.
Our tenth big reform direction concerns quality and safeguards.
We need proportionate regulation and we need a better quality and safeguards framework. And those regulations and that framework need to be updated and expanded to include foundational supports as well as the NDIS.
There also needs to be better information sharing between regulators and much more work needs to be done to build developmental safeguards.
If implemented together, these reforms will improve outcomes for participants, ensure the NDIS is sustainable and restore trust, confidence and certainty in the scheme.
For the panel, and for me, to be involved in this work is an enormous privilege. We therefore very much hope our recommendations will lay the foundation for a scheme that will deliver for people with disability and the broader Australian community for decades to come.
In conclusion, let me come back to our shared responsibility to deliver the promise of the NDIS.
One of the lessons of climate change and the pandemic is that everything and everyone is connected, the NDIS may be operating as an oasis, but no one in the disability community is an island.
Almost every part of government, for instance, is connected to the NDIS.
Put it this way, the NDIS cannot be all things to disability. And so you cannot fix the NDIS without fixing everything that sits around it.
It's in the national interest that governments should finish the job of building the NDIS and its ecosystem, as was envisaged in 2013.
For service providers, the sustainability of your enterprises is directly connected to the fairness and trust of the NDIS.
Your business imperatives therefore mean that you should focus on delivering innovative quality services that are of greatest value to people with disability and Australian taxpayers.
As for participants and their families, it's in our interest to understand what reasonable and necessary supports are, to demand value for money from our service providers and to hold the NDIA and governments to account.
Make no mistake, the NDIS is here to stay.
That's why our unifying purpose must be to ensure it realises its potential and keeps its promise to people with disability and their families.
Thank you very much.
Gill Shaw - Thank you very much, Bruce. What a fabulous speech, thank you. That does take us now to our next part of today, which is a question and answer session with the panel. Just a reminder for those joining us online today, you can lodge a question online using our Slido function. So that can be reached on www.slido.com and you'll see our event pop up there and you join as a participant. So I'd encourage those online to pose questions. Those in the room today can also do that if you don't want get up in front of a camera 'cause I will remind people you'll be filmed today, but you can also ask a question online. So we are gonna open up to the question and answer session now, and I think we might have one that's come through online. I'm just gonna join the panel members down here. Great.
Well, this first question looks like it's one for Judy and Kirsten. So Judy's online today, so we'll get Judy ready to answer this question too. It looks like this question relates to not a surprise given what Bruce touched on in his speech. This question relates to children, young people, families, particularly the milestones and enjoying an inclusive life. So Judy, I guess we'll go to you first, this question, what will change for children and young people and their families under this reform? So Judy, can we get you online? Hi Judy.
Judy Brewer - Hi, thank you for that question and hello everyone. It's actually at our event in Newcastle, I was asked a similar question and it was something around, you know, what will the review do? How will it change my life? And I said then, and I'll say now that if we do our job properly, it will mean a better life for families. It will mean a better life for families, the people they love. It would mean better and more inclusive communities and you know, not to put too fine a point on it, better society 'cause you know, that's the task we have ahead of us. We're a piece in this puzzle. We are trying to bring a whole lot of disparate parts together to create or recreate the ecosystem to support our families. And what we've seen with the NDIS is that in some ways it has segregated and separated society rather than brought us together.
As Bruce just said, getting the NDIS right is only part of this problem. We have to get more than that right 'cause all these parts fit together. In terms of early childhood, there's so much we have to do. We have to start getting to all kids and families, not just those that are a long way into the process and end up through the process in the system, in the NDIS system. We need universal support. We need all kids to be able to have the best chance at life as early as possible. So universal services, we need to. We know already one in five kids starting school have been identified to be vulnerable in one or more area in terms of their development.
So it's not just the kids in the NDIS that we need to be working with. We need to be working with all kids and giving them the best chance at life. So we need to work across a number of sectors, but the one that I find mostly comes across with the families I work with is the education sector. So the NDIS is one part it, but getting the NDIS and the education sector talking together as well as the health sector, housing, transport, mental health, all the other parts of this great big ecosystem, getting them all aligned, working together so that families don't have to do things in the silos that they've had to up till now and certainly in the last nine years.
So I think we can do our job better, but it's gonna require everyone stepping up, each of those systems that I mentioned, not just the commonwealth government, the state governments, local government and authorities to actually create what we can do for our families to give them the best chance at life. Our task is large. It's very, very big and it's daunting, but I think we're well on the way to making a difference. And I've been very much in that early childhood space, but my colleague Kirsten might talk a little bit about adolescence and when we move from early childhood through that education system to adulthood. So Kirsten, I might get you to add something there.
Kirsten Deane - Thanks Judy. Yeah, we have not just been thinking about early childhood, but as Judy said, we've also been thinking about adolescence and young adulthood and what do we need to do to help young adults, young people and young adults and their families build a more inclusive, connected, engaged life. What kind of support and help do young people and their families need to get out there and do the things they want to do?
Whether that's volunteering, getting a job, moving outta home, getting involved in stuff in the community that they want to get involved in, whether it's kind of singing in the local choir or playing sport with the local kind of cricket club. What support and help do people need to make that happen? And one of the reasons we've been grappling with that is like, I'm old, right? And so I remember pre-NDIS, one of the things that young people and families always said was that when you finish school, it felt like you were falling off a cliff and you sort of fell into nothing. And actually one of the things that has happened with the NDIS is that it's still, people tell us, it still feels like falling off a cliff, but actually what you kind of end up falling into is the arms of service providers.
And if the service providers are gonna help you get you where you want to go, that's awesome. But if they're not, that's not awesome. And so one of the things that people have been telling us is that they want more information and more support and help to help build that kind of inclusive life that we all kind of fought for at the beginning. So we've been thinking about what kinds of information do people need to help them build that kind of life. And not only what kinds of information but where they might get it. And what we hear really strongly from people is that they wanna get it from people that they trust. And so, and they wanna be connected with people that they trust, like peers. So we've been thinking a lot about that. And we've also been thinking about how you build, how you find your peeps, right? I talk about this with my other kids. I've got three kids and with my other two we talk a lot about how do you go about finding your community, your peeps, your tribe, the people who like doing the same stuff that you do, who are interested in the same stuff that you and that you wanna spend time with. And I think one of the really sad things that happens in disabilities that we don't spend enough time with young people and young adults about helping them do the same things.
So we've been kind of grappling with what kind of help and what support and what information do young people and their families need to do that, how do you find your peeps and how do you build those bridges and what roles can services provide to help build that bridge but then get outta the way and let that happen. So that's some of the things that we have been thinking about and where that information and support comes from.
Now some folks, they've got a plan, those young people have a plan, their families have a plan, they're doing it and they don't need any help. So in that case, we should all just bugger off and get out of the way. But if people need more help and support, where should they be able to go to get it and what will make it easier for them? And I know that having a young adult daughter who's exactly at this stage, there have been times when we have been fine, but there are times when we could have done with some more help and it wasn't there. So what have we gotta do to make that happen? They're the kinds of things that the reviewers' been thinking about.
Gill Shaw - Thank you Kirsten and Judy for answering that really important question. So we do have another question that's come online, but we will then open up to the floor and encourage you to ask questions here too in Geelong.
So this next question actually, I've got here for probably Dougie, Lisa and Bruce to answer. So I'll probably, I'll go to Dougie first. So, and this touches on the budget issues that were outlined in Bruce's speech. So how do you propose the three step process can work with setting a budget? Surely it's the same line by line package, albeit separated from the first step. So that's a question online. Dougie, did you wanna start answering this one and then we'll throw it to Lisa and then Bruce.
Dougie Herd - I can start if you wish. Hello everyone, my name's Dougie Herd. I'm an NDIS participant. I'm also chief executive officer of an NDIS provider, like the support coordination and plan management to about 300 participants, mostly in Canberra, but also some in the New South Wales.
Throughout the review and our meetings with participants, family members, and in the course of my work, supporting those 300 participants to go to NDIS, reappraisals, variations, reviews, extensions, auto extensions, whatever the current word is for getting what we call at the moment, a plan that anyone who's ever seen the plan later knows is not a plan, it's a budget allocation with some boxes that need explaining. The process has become traumatic. That's a word that was given to us in our first three day session by parents. People feel traumatised by it.
I recall during a period when something called independent assessments was discussed, making a contribution to the work of a joint standing committee, in which I expressed my personal opinion that I thought independent assessments was the wrong way to go, which is my very considered understatement. But there was a gentleman even older than me who was unable to complete his evidence to that review by the joint standing committee because he had been so traumatised by the whole idea of it and by his own experience as an NDIS participant that he broke down in tears. And something is wrong with a status quo that turns human beings into crying wrecks, just because somebody devised and implemented a process that makes them feel powerless, the status quo therefore isn't acceptable, so what is? And I think it's transparently simple, somebody, in this case we are suggesting an NDIA agent, probably an employee, sits down with a human being and has a human being's conversation and begins with what are your support needs? Let's work that out, make sure you've got all the evidence, the opinions, your own expertise to tell you, and then we'll go and work out what we think that might cost in the way of money. Because money matters. Now I think that's dead easy or straightforward for somebody like me, a quadriplegic.
Transparently, I'm sitting in this wheelchair as a consequence of an assessment done by somebody connected to the NDIA who said that quadriplegic needs a wheelchair. Well there is no surprise about that. Most people, however, have no idea that apart from being unable to walk, us quadriplegics can't pee and we need our bowels evacuated and for somebody to get our shoes on, our trousers and all those other things that are called just getting up in the morning. And that's something that requires a bit more deep thought. We need to make sure that that sensitive conversation can take place in a trustful environment, that people understand what the reality of the needs are, each and every day of each and every part of our lives. And then can work out how we might have a budget that will work for us, that we can then talk about how we mobilise it in our lives with greater flexibility.
But here's the thing most people will probably understand. If you're a quadriplegic inside the NDIS, you're one of the most straightforward participants you will ever see. And the more you get away from something as transparently obvious as the hairy Scottish guy, the more difficult it becomes to have a sensitive conversation in which people with a cognitive disability, an intellectual disability, people who have been traumatised by past practise, people with a psychosocial disability, episodic occurrences of the disability. So we need to make sure that that sensitive conversation takes place in the context, not just of the fact that we have a disabling condition, although we may not have a diagnosis, who cares? Diagnoses are just labels. What matters is whether or not whatever you've got stops you getting outta bed in the morning or engaging with your peers or applying for a job or even getting to a job. Those are the things that matter. You don't have to be called a primary disability or a secondary disability. Who knows which is which and who cares. That process needs to be done in a way that is sensitive to who we are as individuals so that we can build around the people, the resources they need, to be able to live a life to function better, to be out in the community, to engage with their peers, to be supported by their peers. And that that is simply the first stage in what we still call the participant pathway. Well that pathway has never been right. It's not terribly smooth and sometimes people get lost and fall off it and feel incapable of getting even past the front door of somebody saying, what do you need?
I think that's what we're going to recommend to government. The last thing I'll say, 'cause I'm taking much too long 'cause everybody knows I talk too long is this, is that the critical thing to getting this right is that the participant experience, their family experience and the knowledge, insights and much broader experience of what we call our disabled persons representatives, organisations, advocates, and others are part of the design, testing, evaluation and implementation process. So that it's transparent, it's obvious, there's no surprise we know what's coming. And more importantly, as a big community, we say, you know what, this feels right, let's do it.
Gill Shaw - Good on you, Dougie. Obviously what you've just said has resonated with everyone in this room. Lots of nodding heads and a round of applause there. Bruce, I'm conscious Lisa, should we throw to Lisa next and then you, is that okay? But we are running out of time today, so we'll see how we go. Lisa, are you available online to comment on this one?
Lisa Paul - I am, thanks, Gill. Look, Dougie, you said it all. I think Dougie totally, totally nailed it. If I were just to encapsulate it in a few key words, I would say personalised, comprehensive, compassionate, expert, transparent.
Gill Shaw - That's perfect, isn't it? What a great way to end that comment. So thank you Lisa, nailed it. So Bruce, over to you.
Bruce Bonyhady - Thanks, Gill. Yeah, look, Dougie and Lisa have nailed it. So there's really very little I could add other than two points. The first point is that the current processes around budget setting focus on functional impairment. And the problem with functional impairment is that there's not a one-to-one relationship between your functional impairments and your support needs. And the best example is given to me by Kirsten, whose daughter has down syndrome and therefore can walk. She can not only walk, she can climb, she can climb a ladder. So she has high function. The only problem is that she does climb the ladder and end up on either their house or her grandmother's house. So there's a classic case where information is being collected that's actually not only not relevant to the budget setting process, but is actually misleading.
The second point is that we think that it's much better to focus on support needs. It's a much more direct, straightforward, transparent way of getting from where people are, which is to have a functional impairments living in different environments to what their actual support needs are and their budget. And as part of that, rather than going line by line, we should really just be looking at what's the essential information that should be being collected. Because as Dougie's pointed out, the level of intrusion that's now involved in planning processes is contributing to enormous stress. So what's the minimum information we need to construct a budget?
And then the other key point is that because the current process is a negotiation, not a planning process, it's a line by line negotiation, then what is introduced is line by line accountability where the money can only be spent against the agreed item that has been negotiated very painfully. So if we can get to an overall situation where the budget is right for that individual and then say to them, get on with your life and if you need it, there is case management or support coordination or advice side by side with the person and their family to optimise outcomes. We think we'll not only have a much better experience for participants, but we'll be helping them and setting them up for success, which is ultimately what the scheme's about. The scheme is really about how to support connected and inclusive lives rather than how to maximise the amount of budget you get in a line by line and very painful negotiation.
Gill Shaw - Thank you, Bruce. So we have reached the end of our time, but we've probably got time for one more question if there's one from the floor. Yeah, we've got one down here. We're grabbing a microphone for you. Won't be a moment. Yeah, could you introduce yourself too, you can just sit down if you like, but if you introduce yourself to us.
Michelle McGarrigle - Hi, I'm Michelle McGarrigle. I have a 28 year old son on the scheme and has been since it started in Geelong. My question is regarding personal participant experience. How will the review change or influence the machinations of the agency, which have shown up to now that they don't follow the legislation with their policies and they ignore federal decisions, mine being one of them, this is why there is currently no trust and it's going to take a lot of time to build the trust back again. Yeah, thoughts?
Gill Shaw - Thank you for that question, Bruce, first and then we could even get Steven online.
Bruce Bonyhady - Yeah, I think a few of us might want to have a, contribute to this answer. So one of the things that we've observed is that we have principle-based legislation, we've then got rules, we've then got operating guidelines. But then below that we've got what the CEO and the agency does through the very high level of delegation that's given to them through the way the act and the rules and the operating guidelines and the currently work. We would, and as we've seen with no change in the rules, no change in the operating guidelines, there can be very significant differences in decision-making day-to-day, week-to-week and month-to-month, which as you say has contributed to a situation where there is a lack of trust.
What we would like to see is as much of the processes for operating the scheme to be lifted up into the rules where it is transparent. And then if participants, as is their right, want to challenge the decisions that are being made under those rules, the agency should act as a model litigant, it should go to the AAT and if necessary, go to the federal court, which would then result in effective change in the way the rules operate. It will then be up to government to decide whether the rules should stay the same or the rules should change. And that is the way it should be. So we are hoping that as a result of the recommendations we're likely to make in that area, we'll have a much more transparent process and with greater transparency, with greater clarity, much greater trust.
So that's our hope. And I think, you know, our thinking at this point is that this is the best way to achieve the sort of outcome that you and others have told us a lot about through the course of this review. Inconsistency, lack of transparency, all undermine trust. So let's clarify these issues. Let's clarify what reasonable and necessary means. Let's clarify the eligibility criteria so there's much less disputation and everyone knows what to expect from the scheme. And as we've made clear what they can also expect from the ecosystem around it, because at the moment the lack of that proper ecosystem is contributing to many of the problems that exist in terms of the haves that are in the scheme versus the have-nots that are out. And that is deeply unfair, deeply inequitable and I would argue unconscionable.
Gill Shaw - Thank you, Bruce. So just to build on the response to this question for you, really good question. I know Steven's ready to provide a perspective from where he is today. Stephen, I hope you're joining us online and can offer a view about this one. Over to you, Steven.
Stephen King - Yeah, so thanks Gill. Yeah, really just reemphasizing a lot of what Bruce said in his response. If we go back to the beginning of the NDIS, you know, the NDIS was designed to put the NDIA in an invidious position. And I think what has happened is there's been a breakdown of trust because of exactly those things Bruce mentioned that the system's not transparent.
The planning and budget process is traumatising, which it should not be. There's a lack of consistency there. Participants have to show their worst day. Part of my background is in psychosocial disability space and the failure of the scheme to understand the recovery oriented model that is necessary for psychosocial disability. And that's fed into this narrative about a lack of sustainability. And the NDIA in some ways has become, you know, the meat in the sandwich of that.
So we have to rebuild the scheme, we have to rebuild it based on trust. We have to make sure it's not the only lifeboat in the ocean 'cause otherwise it will not be sustainable. So we need to think about those foundational services and once it is a transparent, trusted, and consistent scheme, I think we will see that whole culture that is currently existing within the scheme, I think we'll see that changing and I think it will be to huge benefit to participants, to providers and those who really wanna make a difference in this space.
Gill Shaw - Oh, thank you Steven. That's a great response. We have run out of time. What a shame, it's been such a great session. And I'm sorry everyone that we do have to wind things up particularly for the setup that we've got online. But I guess just any closing comments from either one of you before we wind up? I won't hand you the microphone, Dougie, we'll probably need some deliveries for pizza or dinner or anything, eh, I'm joking. Love listening to you speak. Bruce, anything you'd like to say? Yeah, Lisa, was there any closing remarks you wanted to say about today before we leave?
Lisa Paul - Great session, thank you so much for your speech, Bruce, which helps keep outlining what our thinking is and how we want to make participants' lives better, and much more empowered, so thank you.
Gill Shaw - Thank you, Lisa. And thank you everyone for joining us in the room today. Hopefully today's provided you some insights about where the review's panel is at the moment and where it's heading. So we look forward to providing you with further updates. So thank you to all of you in the room today and to those online. So thank you very much, we'll be closing the session now. Thank you.