Building the NDIS to last
In 2011, vomiting from the excruciating pain, Lillian Andren, used every ounce of her energy to appear before a public hearing of the Productivity Commission in Brisbane. She told the shocked Commissioners that her spinal cord had been partially severed in a swimming pool accident, for which there was no compensation, and then she had fallen through the cracks of our society.
She explained that she receives three showers per week, now has daily incontinence problems and, in her own words, “…the delightful irony is, to receive that third shower per week I must have daily incontinence issues. So the system allows me to sit four days a week in my own urine.”
Gwen Morrison, cared for her son Kenny, who had Down Syndrome for his entire life until his death at the age of 61. For 37 of those years she did it alone following her husband’s death.
Fourteen years before Kenny died Gwen told The Age: “Staying alive, that's my aim and my necessity. My main object is to keep alive for him as long as I can, because he's on his own after that.”
Gwen died peacefully, less than a year after Kenny, knowing her life’s work was complete. Until the NDIS many were much less fortunate than Gwen and went to their graves not knowing what would happen to their disabled son or daughter.
Lillian, Gwen and Kenny and the thousands of people with disability, their families and carers who have told their personal stories with enormous courage, dignity and love are the real heroes of the Every Australian Counts campaign which led to the NDIS.
In response, the Australian people demanded equity and we should therefore never forget that the NDIS has at its centre, fair and decent support for people with disability, their families and carers.
In response our political system has acted magnificently.
Never before, has there been such a display of unanimity by all parties and all governments.
Last year, when the National Disability Insurance Scheme Bill was read for a second time in the Commonwealth parliament, over one hundred representatives and senators spoke in favour of the Bill, the largest number of parliamentarians to speak unanimously in favour of a reform, ever. All this in a parliament widely regarded as one of the most divided, ever.
The NDIS has also run the gauntlet of sceptical, hard-headed bureaucrats in Treasury, Finance and First Minister’s Departments—and not just survived; it has grown.
The NDIS will grow our economy, make the most of our human potential, avoid massively growing and unsustainable costs in the decades ahead and only asks Governments to do what people cannot do for themselves.
The NDIS has withstood all of the searching tests set for it and reaffirmed people’s faith that our democracy can deliver what it has promised.
And governments continue to follow through.
In the recent Commonwealth Budget, when every part of government spending was being scrutinised, trimmed and reshaped, the Minister, Senator Mitch Fifield, and the Abbott Government were steadfast in their commitment to the NDIS. They did not cut the Scheme, despite the many column inches suggesting that they would.
These are sure signs that the NDIS was, is and must continue to be above politics, as the Australian people expect.
Now, as we celebrate the first anniversary of the Scheme, the achievements are ground-breaking.
The NDIS is laying the foundations for success:
Four trial sites have been operating for twelve months across the country.
So far, the NDIS has allocated more than 5,400 tailored support packages to Australians with disability.
It has a satisfaction rating from its clients that is over 90 per cent.
And there have been only a handful of appeals to the Administrative Appeals Tribunal, when many hundreds were expected.
A week ago, a further three trial sites began operations, extending the reach of the NDIS to all states and territories except Queensland. And in Queensland important preparatory work by the National Disability Insurance Agency and the Queensland Government is forging ahead under a Memorandum of Understanding.
The Scheme is on budget. I say again the Scheme is on budget
At the end of the March quarter, the average package cost, excluding the effects of Stockton—a large residential facility in the Newcastle launch area, which is distorting the figures—was $32,200 per participant and so below the projected average of $35,000.
The eligibility criteria are also holding very well. Talk of blow outs – have proved only that, “talk”.
The national headquarters has been re-located from Canberra to Geelong, contributing to that city’s renewal and ensuring that the NDIS is grounded in community.
The Scheme is being built to last.
All those points are prima facie evidence that the administration of the Scheme is being undertaken fairly and efficiently.
The main goal of the NDIS is to support people with disabilities and their families to live ordinary lives.
The Vision is to maximise independence and social and economic participation.
To date, the NDIS has supported children and adults with severe disabilities to do such everyday things as to use playgrounds, to dance, to ride bicycles, to learn to drive, to feel safe catching the bus, to go to the library, to go to a restaurant, and to join the Girl Guides so they can make new friends.
The human results measured in gains of personal independence and, for some, workforce readiness, are touching and moving.
There are some great examples.
People like Shahni, a 31-year-old mother who hasn’t felt capable of working since acquiring a brain injury in a bicycle accident at age 15.
Over the last year, the Hunter NDIS site has supported her through a TAFE certificate in business administration, with a focus on legal studies. Now she is not only looking for work as a legal secretary, she is thinking about studying law at university.
People like Robert, also from the Hunter, who is 57 and now has multiple volunteer jobs and is looking for paid work.
And people like the mother of one of the Scheme’s South Australian clients, who is completing her university degree faster because the Scheme has helped her childcare centre’s staff meet her son’s special needs.
And by building people’s resilience and independence, and giving them the control and choice to purchase exactly the supports they need, the NDIS is reducing the amount and cost of support in significant ways.
These early results are very encouraging and consistent with the Productivity Commission report which estimated that the economic benefits of the NDIS would significantly outweigh the costs, it would add 1% to GDP and would stabilise government spending on disability, which has been growing at a rate which would have overwhelmed the budget within a generation, without powerful reform.
However, notwithstanding our best efforts, not all aspects of the NDIS and its implementation, so far, are perfect.
Evidence given to the Joint Standing Committee of the Commonwealth Parliament, earlier this year, shows there are aspects of the Scheme that need to be improved. The internal review processes of the Agency have also identified areas to be refined and strengthened.
Given that the Scheme is still in its trial phase, these lessons are not surprising. They are welcome and will contribute to an even better NDIS.
So despite the potential for further improvements, which were always anticipated given the trial-while-building approach to this reform, across all the key measures on which the Scheme should be judged, the results to date are outstanding.
Why the great start?
Why has the NDIS got off to such a strong start, when other much less challenging reforms have been plagued by immediate and then deep and persistent problems?
The answer is simple: the NDIS is the product of an independent, comprehensive and contestable public policy process that has enlisted the expertise of the best public policy bodies in the nation.
Pluralism and the need to unite a disability sector which has been plagued by deep divisions for decades has strengthened it.
It started with the Disability Investment Group in 2008 and 2009 in combination with the Disability and Carers Council, which recommended a NDIS, as a new way forward.
Then, through 2010 and 2011 the Productivity Commission conducted an inquiry, which attracted over 1,000 submissions, the largest community response in its history.
Their blueprint was, in effect, NDIS 1.0.
Then, Commonwealth, State and territory governments built on the Productivity Commission Report to carefully develop NDIS 2.0.
The major differences with this version were that it included a shared funding model to make the Scheme truly national, and set a three year launch or trial phase, rather than one year as recommended by the Productivity Commission.
Most importantly governments reaffirmed the central recommendations from the Productivity Commission: for the Scheme to be governed by an independent board and for the Scheme to be built on insurance principles.
Like software releases, each version of the NDIS offers improvements and NDIS 3.0 and each of its successors will be based on user experiences and further research.
The Insurance Framework
The importance of the insurance model is crucial to understand.
Any one of us, rich or poor, can have our life turned upside down by a severe and permanent disability just like that [click fingers]. Individually, the risk of being severely or profoundly disabled before the age of 65 is low, but the consequences for those unfortunate enough to be so can be catastrophic.
But by paying premiums to the NDIS through the Medicare Levy, Australians share the risk and help each other. Pooling the risks make them affordable for all.
“There but for the grace of God go I.”
The NDIS is the answer to that prayer.
And by operating like an insurance scheme, using rich data to make continual actuarial assessments of costs and effectiveness, the NDIS is able to continually improve.
This process of data analysis and continuous improvement has already benefitted the NDIS, informing the significant changes that were made to the Scheme’s design in January this year, to improve cost control and streamline processes for taking on new clients.
There’s one further benefit of the insurance model. Because it calculates and seeks to minimise the cost of supporting someone over their lifetime rather than just twelve months, it enables the NDIS to invest in people with disability as well as support them.
Through education, training, employment and providing new equipment like hoists and communications technologies, the independence of participants can be lifted in life-transforming ways, resulting in better quality of life and huge eventual savings for the Scheme.
A great example is Liam, a 20-year-old from Tasmania, whose mother no longer has to contemplate leaving her job to support him full-time, because the NDIS was able to give him a technology and training package that has made it easier for him to be understood and to look after himself so much better.
Another young man with a spinal cord injury in the Barwon region previously needed the support of two carers per day to assist him in and out of bed and to help with daily activities. Under the NDIS a ceiling track hoist was installed in his home which is being used to assist his mobility with the support of just one carer. This change immediately reduced his dependence, while also reducing the costs of supporting this young man by more than $1 million over his lifetime.
These are powerful example of how the NDIS is creating: win-win, an important aspect of the Scheme which needs to be much more widely and clearly understood.
The national aspect of the NDIS creates additional gains, which State-based models could never achieve, because as every insurance expert knows: the bigger the risk pool the more efficient the scheme.
Scheme Governance And The Role Of The National Disability Insurance Agency
While the trial sites continue to collect data to inform the growth of the Scheme, the heart of the Scheme is also being constructed.
The Agency now employs 500 staff, across the seven trial sites and National Office.
Overwhelmingly these roles are client facing—, this is not a bureaucracy—and the Agency has been fortunate to recruit staff with a wide range of experiences and backgrounds, from business, government and the not-for-profit sector.
Amongst staff nearly 11 per cent have a disability, compared with 3 per cent for the Commonwealth public service and similar levels amongst leading Australian companies, and 53 per cent of staff, in the Agency’s first staff survey, have identified as having a lived experience of disability.
We practice the inclusion we preach.
Our staff are personally committed to the Scheme’s success in a way which fills me with optimism and pride.
They have joined the Agency to be part of a nation-building reform, which will change Australia forever and for the better.
If you get the chance to visit our offices, be careful you do not trip over a guide dog and beware the automatic doors that can open very quickly to make way for a high speed wheelchair!
I would also like to acknowledge disability service providers that have historically shouldered a lot of pressure, trying to provide support for people with disability in an under-resourced and stressed system.
I wish to thank service providers for engaging closely with the developing NDIS, rising to its possibilities with great heart, and facing the complexity and challenges of a new market place.
One of the most important tasks of the Agency is to facilitate growth in the market in which the Scheme will operate.
We are seeking to carefully balance our policies and procedures to ensure that growth in demand is matched as far as possible by growth in quality supplies.
Ultimately, responsibility for the Scheme rests with the independent NDIS Board.
The Board has established strong governance foundations and these are reflected in our first Strategic Plan.
The Board is a national board, jointly nominated by the Commonwealth, States and territories.
It has a deep and highly relevant range of skills and experience across business, government and the not-for-profit sectors; and across insurance, economics, disability, human services and health.