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'Everything (and Everyone) With Us'

Australian Disability Strategy: Queensland Forum
Brisbane Convention and Exhibition Centre


I would like to acknowledge the traditional owners of Meanjin (Brisbane) – the Jagera and Turrbal peoples – and pay my respects to their Elders, past, present, and emerging.

Before I start, I want to thank Michelle Moss, CEO of Queenslanders with Disability Network, for inviting me to speak today – and take this opportunity to say how much I admire QDN for the stellar work you do with and for Australians with disability.

I also admire QDN because you don’t just talk about progress.

Instead, constantly – and continually – you put in the hard yards to drive systemic change for Australians with disability.

You keep working for progress – whether it’s through peer support groups .. or engagement with business … or training the next generation of disability leaders … or through your work with First Nations people who live with disability.

And your advocacy is guided by the disability movement’s defining principle:

‘Nothing about us without us.’

The genesis of that mantra – nothing about us without us – is unclear.

Back in the 1990s, American disability rights activist James Charlton said the first people to make that demand were Michael Masutha and William Rowland from Disabled People South Africa.

This was in South Africa in 1993 – just as the country was emerging from Apartheid and preparing for the landmark elections that swept Nelson Mandela to power.

It’s profoundly meaningful that – at a time when South Africa was becoming truly democratic – its citizens were demanding ‘nothing about us without us’.

After all, the right to be seen … heard … empowered … is fundamentally democratic.

There is nothing more democratic than that demand: ‘nothing about us without us’.

Democracy is also not finite. Our individual rights and responsibilities do not decrease when the franchise is extended – or made accessible – to others.

On the contrary, democracy is infinite – it is as expansive as our ambitions and only as constrained as our imaginations.

That’s because democracy grows stronger when it becomes more inclusive and representative.

Why? Simple. A democracy is only as strong as its people.

That means the more engaged our community is the more representative our democracy becomes.

That’s why it’s in our national interest to ensure every Australian feels that they belong, that every Australian trusts they are welcome to make a contribution, that – to borrow from the campaign for the NDIS – every Australian counts.

That is why when we say, ‘Nothing about us without us,’ we should add, ‘Everything (and everyone) with us.’

I am therefore delighted that we have so many people here today and online who are not from the disability sector. Thank you so much for your interest.

Michelle has asked me to speak to you about the importance of Australia’s Disability Strategy, or ADS, and Queensland’s Disability Plan 2022-2027, or QDP – and I will do so.

But, first, I would like to congratulate everyone who has contributed to Queensland’s Disability Plan, its theme, Together, a Better Queensland, and its focus on ‘driving implementation of the seven outcome areas… in Australia’s Disability Strategy in a way that encompasses the unique aspects of Queensland’s peoples, regions and diversity.’

I would also like to congratulate all those who contributed to The Voice of Queenslanders with Disability report, which the Minister has just launched, because of the clear and honest picture it paints.

Today, my key theme is going to be how Queensland’s Disability Plan, Australia’s Disability Strategy, the NDIS and all the other government policies which affect people with disability all need to work in harmony, because only then will people with disability live inclusive, engaged, connected, and safe lives.

Let me start with the thinking behind the Independent NDIS Review, which I co-chair with Ms Lisa Paul.

I would also like to especially acknowledge my friend, Mr Kevin Cocks, who is a member of the NDIS Review Panel and who is here today. Kevin has done a huge amount for people with disability as Queensland’s Anti-Discrimination Commissioner and is a champion of human rights and accessibility.

NDIS Review

The NDIS Minister, the Hon. Bill Shorten, established the NDIS Review last October to evaluate the design, operations, and sustainability of the National Disability Insurance Scheme.

He has asked us to improve the experiences of participants and families, ensure the NDIS is sustainable and to restore trust in the Scheme.

From Day One, Minister Shorten has been very clear about how the Review should work.

He wanted it to not just consult but engage deeply with people with disability and their families and carers.

And he wanted people with disability to have a real say in its proposed solutions.

Needless to say, these are fundamentally democratic ambitions.

The Review is working very hard to fulfill those ambitions.

Thus far, we have received more than 1000 public submissions.

And we have heard directly from many thousands of Australians with disability.

We have also travelled to every State and Territory to listen and learn first-hand about what is – and isn’t – working.

In February we were privileged to host an all-day workshop in Queensland with people with disability and their representative organisations. It was great to have Kevin there and a wide range of people who told us what needs to change.

Earlier this month, members of the Review spent a week visiting the Top End and spending time with Aboriginal and Torres Strait Islander communities.

We travelled to Darwin … to Maningrida … to Groote Eylandt … to Tennant Creek … to Ali Curung … and to Alice Springs.

The hospitality of the Aboriginal and Torres Strait Islander people was very welcoming.

However, eight years after the NDIS commenced in the Northern Territory, the lack of impact from the NDIS, especially in remote communities, is not just disappointing; it is deeply shocking that so little has been achieved.

A purely market-based approach is not working.

A decade after launching, the NDIA is still flying or driving support workers into and out of remote communities.

What this fly-in/fly-out mentality tells me is that we need a very different approach – an approach that builds the NDIS community-by-community, based on local strengths and needs and aligns with Australia’s Disability Strategy.

If this grassroots approach is properly implemented, the NDIS will be socially and economically transformational for remote communities – because it will mean training local Aboriginal and Torres Strait Islander people to be support workers, allied health assistants, recovery coaches and peer workers.

I’m talking about giving one group of local people the training they need to deliver the services another group of local people need.

This approach just makes sense.

It makes sense because not only would it be more cost effective, it would also boost remote economies, deliver culturally-safe services, and help Close the Gap.

But – and this is an important point that goes to the heart of so many of the challenges we face – the NDIS cannot do it alone.

The NDIS will not work in isolation. It needs to be delivered alongside better food security, improved housing, better health services, and greater community safety.

The NDIS was never designed to – and will not work – on its own.

But – if the fundamentals of a decent life are in place; if people are safe and have enough to eat and somewhere to sleep – the NDIS will not just work. It will transform lives – and help make Closing the Gap a reality.

That’s why the NDIS needs to be nurtured and supported by all levels of government – local, State, Territory, and Commonwealth.

The reason I am highlighting remote communities is to make a broader observation.

The NDIS is a life-changing reform for many Australians, but it cannot work as it could and should if it exists in isolation from other government and community initiatives.

The NDIS cannot be an oasis in the desert. Nor can it be an island.

It is a national project that must work locally.

The task at hand – and this goes back to the nothing about us without us maxim – is to make the NDIS work for everyone.

Not just the Scheme’s participants.

That is why our Terms of Reference includes supports for people with disability who are not in the NDIS and use mainstream services and infrastructure – such as health, education, housing and transport.

There are about four million Australians in this group.

That huge cohort is an important – and often unremarked – focus of our work. After all, the barriers they face are at the heart of the ADS and QDP – as well as fundamental to the sustainability of the NDIS.

Systemic challenges

That’s why, as I said, we need to make sure the NDIS works for everyone – not just the Scheme’s participants.

Let me unpack that thought for you – because it’s important.

The disability movement has much to be proud of in regards to the NDIS.

After all, this unprecedented reform came from us – the people – rather than the policymakers or politicians.

We initiated the idea. We campaigned for its development and establishment. And – whenever there have been attempts to stray from the democratic principles of the NDIS – we have fiercely defended our Scheme.

That means we must also be honest – and not let our love of the NDIS, or its successes, blind us to its weaknesses.

That also means we must systematically work to identify current challenges and their causes – and find workable solutions.

For instance, more than a decade ago, the Productivity Commission envisaged the Scheme working in tiers.

Tier 1 covered all Australians, because the scheme provides insurance for all those aged under 65 who are born with or acquire a permanent and significant disability.

Tier 2 covered people with disability who do not need an individualised support package – which is roughly one-in-five Australians.

Tier 3 covered people with permanent and significant disabilities who required individualised support – which is roughly one-in-fifty Australians.

The first National Disability Strategy – released in 2010 two years after the Commonwealth ratified the United Nations Convention on the Rights of Persons with Disabilities – stated, in a foreword signed by every leader of every jurisdiction in the Federation, that:

‘A new approach is needed to guide policies and program development by all levels of government and actions by the whole community, now and into the future.’

That new approach included – as its number one commitment – a promise to create ‘inclusive and accessible communities’.

However, when the NDIS was introduced, governments did not remove barriers to participation for the one-in-five Australians living with disability.

Instead, they did the opposite and removed general disability supports, as the NDIS was given total priority by all jurisdictions.

In addition, long-term funding for mission-driven organisations – which provide independent information, advocacy, tailored advice and build connection, engagement and empowerment – was reduced.

Not only that, Local Area Coordinators within the NDIS – who were meant to play a critical role in building community capacity and supports for all people with disability – were never given that critical role.

Instead, due to NDIS staff caps, Local Area Coordinators became NDIS planners.

Tier 2 NDIS funding was rebranded as Information, Linkages and Capacity building – or ILC – and ILC’s totally inadequate funds have been managed as a short-term grants scheme.

These decisions have had very negative consequences.

In 2021, a report from researchers Professor Erin Wilson and Dr Chris Brown at Swinburne University – The ILC Landscape: A Snapshot – found:

‘The major needs facing people with disability in Australia remain, largely, unchanged … What has changed is the embedding of the NDIS and, with it, a change (and loss of services) … There has been a failure to see substantial changes in the inclusive capacity of mainstream services.’

That’s why the Panel is finding that Australians with disability are either in the NDIS or they are on their own – because Tier 2 supports are either non-existent or insufficient.

As a result of this gap in Tier 2 services and supports, the only real option for people with disability is the NDIS.

As a consequence, a scheme designed to cater to the one-in-fifty Australians with permanent and significant disabilities is being overwhelmed by the one-in-five Australians with disability who have nowhere else to go.

This crisis – which I’ve equated to the NDIS being the only oasis in the desert – was not caused by Australians with disability.

It was caused by systemic failure.

That is why we are seeing system-wide escalations in costs – and that is why the sustainability of the Scheme is being questioned.

Systemic solutions

What, then, do we need to do to make the NDIS more sustainable and – at the same time – ensure that the ADS is more effective?

To answer this question, I would like to share four questions I have been asking myself – as well as some initial thoughts.

My first question is:

Do we need to reframe our policy thinking in relation to Tiers 2 and 3?

The reason I ask that is because I am questioning whether it was wise to break the disability community into tiers.

After all, people with disability do not fall neatly into tiers. The truth is that the compartmentalisation of the population into Tiers 2 and 3 was always an artificial construct from the Productivity Commission.

Further, the supports that should be available in Tier 2 – such as independent information, tailored advice, linkages, and capacity building through peer support – should be available to all people with a disability.

Individualised supports could then be built on top of those universal supports for those who need them – creating much more equity between Tiers 2 and 3.

My second question is:

What is happening with our children?

Many more children are entering the NDIS than was projected back in 2013.

Why is that?

I’m not suggesting that these children don’t need support. Of course, they do, because we need to invest in all children to give them every opportunity.

However, I suspect that many parents are being forced to seek access to the NDIS for their children because they are not receiving the supports they need in everything from early childhood development to healthcare to education.

In other words, the NDIS is an early warning system of a generational social challenge – and we need to respond to that challenge with an evidence-based, whole-of-government response.

When you break down the distribution of children in the NDIS by socio-economic area, 12 per cent of boys in the lowest socio-economic area are in the NDIS but only 5 per cent of those in the highest socio-economic area.

This would suggest that the NDIS is shining a light on multi-generational disadvantage – and that disadvantage needs to be addressed by a broad range of government actions – including Australia’s Disability Strategy – so that early childhood services and education are much more inclusive of children with disability.

My third question is:

How can we strengthen the community sector, so as to create more connectivity?

Today, 93 per cent of government disability spending is on the NDIS.

The NDIS fee-for-service model is driving an ever-widening demand for specialist disability services, rather than building social and community capital.

We are seeing more co-location, rather than true inclusion and connection.

I believe that we need to enlist more groups like QDN to help deliver the community supports that Australians with disability need to overcome barriers to social and economic participation and better align the NDIS and ADS.

My fourth question is:

How can the ADS, QDP, and NDIS work together to create cultural change? How do we ensure that every workplace, every sporting club, every shop is accessible and inclusive?

Forums like today are a very important start – as is the goal in the ADS and QDP committed to seeking cultural change.

The solution lies in the commitment every leader of every jurisdiction in the country – including local government – made when they signed up to the second iteration of Australia’s Disability Strategy.

In the ADS, every local, state and federal government committed to the ideals of ‘respect, inclusivity, and equality’.

The government leaders said:

‘Our responsibility as governments, leaders and citizens is to build a society in which people with disability can participate as equal members with equal opportunities to fulfil their potential.

‘The success of this Strategy rests in a whole-of-community response, inclusive of business, the non-government and services sectors and individuals. Only by working together can we ensure all aspects of Australian life are inclusive and accessible.’

Those are admirable sentiments.

We now need leaders in government, business, unions and the community sector to put those sentiments into practice.

Systemic reforms

Before closing I want to highlight two vital pieces of social infrastructure that will support both Australia’s Disability Strategy and the NDIS and which give me great hope that the future will be different to the past.

Over the last three years, people with disability and colleagues from other universities have been working with the Melbourne Disability Institute to establish a National Disability Research Partnership or NDRP.

The Commonwealth has committed $15 million to NDRP over the next three years.

That funding will be used to research ways to improve disability policy and practice.

That research will be led by people with disability.

In addition, following a recommendation to Ministers from the Review, Commonwealth, State and Territory governments have very recently agreed to establish an enduring National Disability Data Asset or NDDA.

The NDDA will bring together NDIS, social security, tax, employment, medical, health, education, justice, and housing data.

This initiative will create an extraordinary platform for research – enabling us to identify how our systems do and do not serve the interests of people with disability and their families.

In turn, this data-driven research will inform and improve the ADS.

Together, the NDDA and NDRP will support the Targeted Action Plans contained in the ADS.


Finally, let me come back to the NDIS Review.

The Review is deeply committed to improving both the NDIS and the ADS because these two policies must work hand-in-glove.

The NDIS – as Minister Shorten has said – is a monumental socio-economic reform on a par with Medicare.

It has transformed the lives of hundreds of thousands of Australians with disability and its impact will only grow in the decades to come.

But it can and must be improved.

We cannot be satisfied with the current state of the NDIS just because it is better than what we had before.

We must strengthen Australia’s Disability Strategy. And we must secure the sustainability of the NDIS.

But the NDIS Review cannot work alone.

We need your help.

We need your lived experiences.

We need your solutions to the challenges facing the NDIS and the ADS.

With that in mind, I have a favour to ask.

When you leave this forum today, talk to your friends and colleagues about what you have heard here – because, if we want to build a society that is truly inclusive, we need champions of change.

We need people in every part of the community and the economy to walk beside people with disability so they are not shut out of mainstream life.

We need everything – and everyone – with us to ensure nothing about us is done without us.

Thank you.