Introduction
In the spirit of reconciliation, I acknowledge the Traditional Custodians of the country I am in today, the Port Curtis Coral Coast People of Gladstone. We pay our respect to their Elders past and present and extend that respect to all Aboriginal and Torres Strait Islander peoples today.
I’ve been asked to talk about the future of the NDIS.
Before I do this, I want to us to reflect on our journey and purpose.
Our journey and our purpose
The NDIS was designed to change people’s lives by investing and empowering people with disability, something that had been practically non-existent for people who lived with disability before this reform.
In late 2007 as a newly elected MP and a junior minister, I was given the role of the Parliamentary Secretary for Disabilities. Nothing prepared me for the entrenched unfairness I saw for Australians living with disability and the people who loved them.
Working with grassroots disability campaigners and advocates, we championed the rights of people with disability for the NDIS.
While the scheme eventually received bi-partisan support and was successfully introduced by the Gillard Government, I don’t believe received wholehearted enthusiastic excitement from subsequent conservative governments.
I dedicated the past three years, as Shadow Minister for the NDIS, to shining a light on the former conservative governments’ lack of understanding about the power of investing in people with disability.
Now we have an opportunity to return the NDIS to its original intent.
The intent of the NDIS was to value people with disability, not measure their price in a budget.
The intent of the NDIS was to see the whole person not just their impairment.
That early investment improves the lives of participants and their families by increasing their economic and social participation.
Early investment also benefits the broader community, including productivity, participation, and quality of life, and reduces future cost to communities and governments – including health, social security, housing, justice and carer costs.
The original business case for the NDIS estimated a net present value saving because early investment could more than halve expected future expenditure of $680 billion if nothing was done to support people with disability.
Where to from here?
There has been a lot of focus over recent years about the NDIS having more participants than expected.
This is principally driven by a greater number of participants with autism entering the NDIS. We now have 175,000 participants with autism – that’s almost double what had been forecast.
Whilst we shouldn’t ignore this number, we should also celebrate the fact that children with autism and their families can now receive support to improve their lives and contribute to the community by building on their strengths.
Not admitting children for early intervention doesn’t help our kids or the rest of us.
When we hear about the price of the scheme, we should focus on and value each person and their story.
I often receive amazing letters from very modest NDIS participants and their families.
Today I would like to read to you a class Rostrum speech written by Henry, aged 9, that was sent to me by his proud mum. In her forward letter, Henry’s mum talked about how much the NDIS has helped her son and their family, and about how we can continue to improve the NDIS - like making the system simpler to engage with, helping participants to find the most effective supports and importantly ensuring there’s better interaction between the NDIS and other systems, including the school system.
“Hi I’m Henry and I’m here to talk about autism.
Some of you may know I am an Autisic person. And I am awesome!!!
Some of you may not know that being an Autistic person is really good.
I can see and do things that others can't. But it can be hard.
You don't have to worry, you can’t catch Autism like COVID!!
I see the world differently. Now that’s really cool.
So, some school tasks are hard for me and easy for you. Some tasks are easy for me and hard for you.
I like to see things. I think in pictures. I learn from videos and watching people.
When (our teacher) tells us what we need to do I find it difficult. But when I see what we need to do I can do it.
I really like to focus on a few things.
When I like something I like to do it over and over again. I hate change.
I spend lots of time practicing basketball. I can do it for a whole day.
I like to watch the same movies over and over again - my brother hates this!!!
I have a great imagination - I can create awesome worlds and creatures.
I have high expectations, and when things don’t happen I can get very upset.
I am an autisic person, and I am proud of it!!!
But I am told I need to be like you to fit in.
But why do I have to act like someone else?
Albert Einstein was an autistic person and Elon Musk is an autistic person - he invented Tesla cars and sent rockets into space.
What would have been next if we changed them.
Maybe what’s next is that me and other autistic people are accepted for who we are.
Maybe what's next is we build on my strengths and yours. So I ask you what’s next!!”
Such a terrific speech and reminder of what the NDIS is here to do.
My answer to Henry’s question - and also the theme of this conference - about ‘what’s next’ is that we need to ensure that the NDIS is effective and empathetic at achieving its goals and it works with a better, broader national disability strategy. And its evolution in the product of empowered co-design. Otherwise, we’re letting down participants, their families, our community.
When people talk about scheme sustainability, they often take a narrow view of sustainability. They’re focused on the NDIS line-item in the budget each year.
Our Labor government, as Treasurer Jim Chalmers eloquently puts it, is focused on the “quality of spend”. If the NDIS is effective, there’s a huge return on our investment in years to come.
Not only does this return include stronger meaningful social and economic connections for people with disabilities, there’s also a financial return to taxpayers.
This return includes reducing future costs of other line-items in the budget - which the original Productivity Commission talked about - including reducing health, employment, social security, caring, housing and justice costs.
Indeed, when we consider the 175,000 participants with autism, knowing that people with autism are currently almost eight times more likely to be unemployed than the general population, there is a significant opportunity to improve economic outcomes from early intervention.
My focus as the new Minister for the NDIS is to improve the effectiveness and empathy of outcomes for people from the NDIS.
To do this, we need to work with participants to identify ways to empower participants to find the most effective supports to achieve their agreed goals. And we need to ensure that providers have the right incentives and support to deliver the goals of participants and the NDIS.
In turn to do this, we need to ensure that all programs - including health, education, care and support, infrastructure - work together to achieve better outcomes through an integrated approach.
Citizens have touch points with each of these programs.
As a result, Commonwealth, state and territory, and municipal governments need to ensure that their programs work together to better support citizens – rather than operating in silos.
The NDIS will not fulfil the promise if it is the only lifeboat in the ocean for people living with disability. This applies to the federal government activities. And states and territories need to continue to ensure that its programs support for people with disability, as the NDIS will not replace their programs. For instance, the health system will still need to provide support for people with health issues and the school system will need to provide support for children with disability.
And the discussion of the role the states and territories have in delivering education must include all kids – including kids with learning challenges,
In exchange, States and Territories can expect that the Commonwealth will ensure that NDIS participants aren’t stuck in hospital beds because we haven’t assessed them for supported disability accommodation and haven’t supported them to get accommodation.
The NDIS was never created to subsidise the school system. We need schools to help maximise their potential, so that children like Henry can build on their strengths and ‘send rockets into space’. When Henry gets these opportunities, we all benefit.
To improve the effectiveness of the NDIS, it’s important that first we rebuild trust.
Lamentably, we’ve seen an erosion of trust over the past few years.
Participants have lost trust as a result of the Liberal Government sponsorship of the NDIA’s Operation Green Light and its push for Independent Assessments. Participants feel that these tactics were to squeeze costs to fit Government forecasts, and question rather than staying true to NDIS’s original intent of a demand-driven investment approach.
Fairly or not, many participants also feel that the Agency has been cutting plans arbitrarily and is not transparent about access or plan-value decisions.
This has culminated in the significant number of cases before the Administrative Appeals Tribunal, especially in the financial year starting July 2021.
I am looking for ways to reduce this pain-point for participants, improve transparency and find alternative, less costly way to resolve disputes.
Four thousand five hundred court cases is a clumsy, expensive way to allocate resources in a Government safety net.
This will help re-build the trust of participants, their families, and the community.
If we rebuild trust and improve the effectiveness of the NDIS, children like Henry can get effective supports early in life to build on his strengths and put him on a better life-trajectory. If the NDIS is effective, he may need fewer years of intensive support and trust that the NDIS will be there to help him again if he needs greater support later in life.
Our election commitments give us the foundation to improve the effectiveness of the NDIS and rebuild trust.
We will put participants at the centre by co-designing improvements to the NDIS and boosting the number of people with disability on the NDIA Board and throughout the Agency.
We will improve the NDIS design, operation and sustainability; stop unfair cuts; and lift NDIA staffing caps.
We will clamp down on waste and fraud.
And will improve the planning pathway and appeals process to make NDIS decision-making fair and investment-focussed, ending the nightmare of red-tape and midnight anxiety that a loved one’s package will be randomly slashed.
We will build evidence to measure the effectiveness of the NDIS.
And find new ways to make each dollar go further, including by making sure that the NDIS’s pricing and payment system incentivises providers to deliver outcomes for participants and the community.
I look forward to us working together to make the NDIS a world-leading scheme that we can be proud of.
Why shouldn’t we aim for the sky, like Henry?