Opening of the National Disability Summit, Melbourne
*** E & OE – Proof only ***
A wise man once said: The problem with being poor is that it takes up all of your time.
You could say the same thing about having a disability.
So much time and energy is spent on performing basic tasks; battling through the systems that have been set up without your needs in mind, politely explaining your condition to people who can’t or won’t understand,
People end up beaten and exhausted and without the time or energy to question the way they are being treated.
When it takes so much effort to survive, day-to-day, how can people be expected to thrive?
The same applies to disability organisations.
They don’t have enough time.
They don’t have enough money.
And they are overwhelmed by wave after wave of human need – with our ageing population set to turn those waves into tsunamis.
When your organisation can’t meet demand today how can you be expected to cope tomorrow?
What is the answer?
What can we do as individuals? As organisations? As a nation?
That is why fair dinkum change is so important:
This is one of those rare occasions when people have the opportunity to lift their eyes from their daily work and – by sharing information … by sharing ideas … by sharing experiences … find a way through the challenges that lie ahead.
We need a vision for the future.
The Book of Proverbs says:
‘Where there is no vision the people perish.’
And it’s not a stretch to quote the Bible when we’re talking about the lives of Australians with a disability.
Since deinstitutionalisation, many Australians with a disability have been like the Israelites after the Exodus from Egypt – searching for 40 years for the destination they dream of.
And it’s time to find a way out of the desert.
Before I was elected to politics I spent 14 years in the union movement ant let me tell you something:
I thought I knew my country.
The past two years have opened my eyes.
Hidden in plain sight are more than two million Australians who are citizens in name, but – in reality – are more like exiles in their own country.
I could tell you about the people I’ve met – the people with disabilities, their families and carers.
I could tell you about the scattered and unconnected services.
I could tell you about the waiting lists.
I could tell you about the future projections – as laid out in the DIG report – that the waves of need are about to become tsunamis.
But I won’t do that today.
You know the stories. You know the shortfalls. You know the betrayals.
The fact is we cannot continue wandering through this desert.
We cannot continue putting blood, sweat and tears into systems that are inadequate today and will be overwhelmed tomorrow.
We need to find a way to stop surviving and start thriving.
I’m talking about uniting behind reforms that are achievable and will make a difference to those two million involuntary internal exiles.
I’m talking about the National Disability Insurance Scheme.
No doubt you’ve heard of the National Disability Insurance Scheme – which is currently being considered by the Productivity Commission.
Before I talk about where the Productivity Commission inquiry – and where it might take us – let me talk briefly about where we’ve come from.
As dire as things are, real progress has been made since the Rudd Government was elected. Real progress championed by senior minister Jenny Macklin.
- We’ve doubled the amount of money available through the NDA – taking it to $5 billion over 5 years – and introduced better benchmarking.
- We’ve increased Carers Allowances and the Disability Support Pension.
- We’ve changed the Disability Employment Network – and ended waiting lists for people with disability who want help to find work.
- The first Access to Premises standards – delivered after a decade of delay.
- We have signed the UN convention on the Rights of People with Disability.
- And, most importantly, we have begun an inquiry into the possibility of a disability insurance scheme in Australia.
Are these changes enough?
Not by a long shot.
We have barely made a dint in the problem.
It’s a start, though.
And, at the risk of sounding political, I believe it is more than what was done in the 11 years of the Howard Government.
I think we are heading the right way, and have given a new energy to the disability sector.
That new energy is critical.
It’s critical because we’re going to need all the passion and energy we can muster to deliver change of the magnitude that is required …
… which brings me back to the National Disability Insurance Scheme.
If the National Disability Insurance Scheme is the answer – as many believe it is.
If the National Disability Insurance Scheme is equality, self-determination and entitlement.
If this is it, now is the time for the disability community to adopt it as a cause – and campaign for it.
I’m not saying that to abrogate the Government’s responsibilities.
I am a believer in Government, and a passionate supporter of what this Government is doing in disability
The point I am driving at is this:
I do not believe Government can provide the whole solution.
The challenge is too great for Government alone.
We need to enlist corporate support.
We need to raise public awareness and understanding.
We need all hands to the wheel.
We can get further faster if we educate and enlist the support of the general public and business community.
An example of what I’m talking about is the National Dialogue on Universal Housing.
I set up the dialogue last year – and made sure it included representatives from the building industry.
So far, the dialogue has resulted in a series of commitments – including the aspirational target of having all new homes built to universal design standards by 2020.
Why is the building industry getting onboard?
Simple. They can see that as the population ages and disability becomes more prevalent it’s commercially stupid to build houses that older people can’t live in.
Similarly, why do homebuyers now want Green homes?
Their awareness and understanding has been raised to the degree that they can see that an energy-efficient home will be cheaper to run and easier to sell.
We need to do the same with universal design standards.
We have to make homebuyers aware of the fact that owning an accessible house is a smart investment.
We have terms like ‘Green Dollar’ to refer to the purchasing power of people with environmental values …
… and ‘Pink Dollar’ to refer to the purchasing power of gay men and women.
I don’t know what colour we’d choose, but we need to make businesses aware of the purchasing power of the ‘disability dollar’.
We have to make them understand that they are ignoring a market of more than a million people.
Once the penny drops, hopefully it will be easier to get businesses to understand that there’s more to workplace diversity than gender, race and religion.
They need to see that one of the best ways to understand a market segment is to employ people who understand that market.
In other words, it’s not corporate charity to employ someone with a disability – it’s good for your business.
People with disabilities are not liabilities, they are assets.
It goes without saying that a National Disability Insurance Scheme would create a huge incentive for business to start seeing people with disabilities as assets, as consumers in need of goods and services, and as employees who can deliver a competitive edge.
We cannot afford to take progress for granted, though.
Australia considered a National Disability Insurance Scheme once before – during the Whitlam Government.
That opportunity was lost with the Dismissal – but has now been rediscovered.
Thirty-five years down the track, the Productivity Commission is now investigating how such a scheme could be implemented.
It’s taken two years of hard work to get to this point.
The Shut Out Report, the Way Forward Report from the Disability Investment Group, detailed the need for transformational change.
Likewise, the impact the ageing of our population is beginning to be understood.
There is greater awareness and greater understanding – and this awareness and understanding has created a great opportunity.
Together, we have an opportunity to finally leave the desert behind and set a new course for a better destination.
Shakespeare wrote in Julius Caesar:
‘There is a tide in the affairs of men, which taken at the flood, leads on to fortune. We must take the current when it serves or lose our ventures.’
Shakespeare’s character – Brutus – was talking about the final battle of a civil war in ancient Rome rather than the fight to deliver a disability insurance scheme, but the principle holds.
We are on the verge of a transformational change in the way we deal with disability.
We are that close.
But we will require a strong and united, ebullient, strategic and well-funded campaign to make it a reality.
A campaign like no other the sector has seen.
Progress must not be taken for granted.
We need to make the moral, economic and political arguments for an insurance scheme.
We need to be unified.
We need to be organised.
And we need to be motivated.
It can be done – just look at America’s Medicare reforms if you don’t believe me.
Many of the details of the scheme are yet to be worked out.
There will be complexities, arguments about scope and definition and how best to structure it, and how best to administer it.
But let’s not be diverted or delayed from our goal.
Our goal is transformational change.
The kind of change that will put Australians with a disability on a secure footing, and deliver gains that cannot be wound back.
Some people say this is a once-in-a-generation opportunity for social and economic reform.
We can’t afford to think the chance to implement a National Disability Insurance Scheme will come around again in a generation if we miss this chance.
The task is ours to complete – not our children’s.
Now is our chance to deliver the equivalent of a Medicare or a compulsory superannuation scheme.
We need the sector to be vocal and united, to be loud and proud, to be organised and to be political, to be consistent and persistent.
When Governments hear a babble of voices from any sector, advocating competing or conflicting demands it is easy for all of those demands to be ignored.
When Governments are repeatedly confronted with the same message, the same demands, the same visual evidence, the same cries of the heart – they have to listen.
When a sector is fragmented, disorganised or riven by turf-wars, it will end up fighting over a shrinking power, rather than a power.
We need our power to grow
My time in the union movement as an organiser taught me that 95% of a successful campaign consists of uniting people behind a common set of demands.
Success is overwhelmingly preparation of the base, not contact with decision makers.
Success is overwhelmingly an understanding by the base of the demands.
Success is the creation of an overwhelming inevitability.
As leaders of this sector, I look to you to play the role of an organiser and unite those with an interest in disability behind a common theme.
I do not believe people know what an NDIS means.
I do not believe people can individualise the benefits of an NDIS.
I do not believe people fully grasp the immediate gain for each person.
But I do believe that, if the disability sector unites, the public will follow.
Generally speaking, the Australian people are not malicious about disability.
A vague sympathy is felt, but there is no empathy.
Australians in general don’t understand the magnitude of the crisis, nor the level of pain and sorrow.
But they can and they must understand.
We need to turn that sympathy into empathy.
We need to make Australians understand that what is happening to people with a disability could happen to them.
If we can do that, we create the overwhelming inevitability necessary to succeed.
That’s why we need to keep driving home the point that an NDIS will deliver huge benefits for people with disability and should not, in the long-term, lead to an increase in taxes or government budgets.
It is the Productivity Commission’s job to crunch the numbers, and to work out what can be afforded and how, but it is clear to me that we are already spending a lot of money on disability.
Australian governments already spend around $22 billion a year in total on the disability welfare system.
- Around $8 billion goes towards payments to community care and support providers;
- Nearly $3 billion is for payments to family and other informal carers;
- And almost $11 billion goes towards income support through the Disability Support Pension for more than 770,000 Australians.
Add to that the indirect costs of disability – such as the cost of keeping people with an intellectual disability in jails, the cost to the health system of disabilities diagnosed and treated too late, and the economic cost of making it impossible for countless Australians to participate in the workforce.
What am I driving at?
The current system is not working – and is not cheap.
We need to make the case that sticking with the current system is a false economy.
We need to make the case that an insurance scheme will save money in the long-term – as will any policy that intervenes early and moves people from unemployment to work.
If we do not make that case we leave ourselves open to scare campaigns run by the same conservative forces who said Medicare and superannuation was too hard and too expensive.
The DIG report found the demand for disability services under the current model is rising by 7.5 per cent each year.
A 2005 Australian Institute of Health and Welfare analysis of Commonwealth State Territory Disability Agreement funded services, showed a high level of unmet need. Noting that its estimate of community access to services was conservative, the analysis found:
- Unmet demand for accommodation and respite services – 23,800 people;
- And unmet demand for community access services – 3,700 people.
The vast reservoir of goodwill and love possessed by carers has helped us cope up until now – but there is a limit to human endurance.
We are reaching that limit.
The DIG report found that fewer people are taking on informal caring roles due to a range of factors, including increasing workforce participation by women and smaller families.
The impact of these trends on the disability services system will be significant.
Because non-paid care provides for more support than paid care, a 10 per cent reduction in providing informal care translates into a 40 per cent increase in the need for funded services.
Because of limited data, we don’t know the current level of unmet need for services for people with disability.
Generally, the prevalence of severe and profound disability increases with age, and is of particular significance for an ageing population.
Over the next 40 years, a steady increase in the number of people with severe or profound disability will continue and is projected to grow from 1.4 million to 2.9 million.
But, amidst the picture of increasing demand, the DIG report also identified some important savings from an insurance scheme.
- Income support savings: a NDIS will lead to a reduction in the number of people on the Disability Support Pension (DSP). On reasonable assumptions this could amount to a reduction in DSP recipients of 140,000 people within 10 years, implying an annual saving of $1.6 billion at that time.
- This does not include reduced Carer payments and greater tax revenue.
- Given the average DSP recipient stays on the payment for 11 years and receives over $200,000 in that time, even a small drop in numbers will deliver big savings.
- Health care offsets: the calculations of the cost of a NDIS include $2.34 billion for the costs of care of people with a variety of physical conditions including cancer that may be more appropriately met through the health system.
- Aged care offsets: about half the people who now receive aged care incur their disability before the age of 65 and so, progressively, would be covered by the NDIS.
- While very small initially, in 2046-47, a NDIS could account for half of the aged care costs, which are projected to amount to 2 per cent of GDP
- Lower homelessness and criminal justice costs: better managed care and support should reduce the incidence of disability leading to homelessness, crisis accommodation, child protection system, drug and alcohol services, hospitalisation and imprisonment.
- This could generate savings of several hundred million dollars per annum over time.
The overall picture shows that the NDIS is an investment that will yield dividends that increase over time.
In other words, the NDIS will make Australia healthier, happier and more productive.
So how do we make the picture painted by the DIG report a reality?
I think at heart the answer is political.
We need to increase the political power of people with a disability.
Right now, the 1.5 million Australians with a serious disability, and their 500,000 full-time carers, do not have the resources they need to represent themselves.
They do not have the equivalent of a union.
As a consequence, they lack an effective and united voice.
This, in my view, is a tragedy and has led to disability becoming both Australia’s last great civil rights challenge and largest political sleeper issue.
I have long thought many voters would rate disability policy on an equal footing with issues, such as the environment and industrial relations, if they were given a clear choice and a clear explanation of how their vote would ease the suffering of people with disability.
For a long time my theory has been just that – unproven and perhaps therefore unconvincing to my colleagues.
This year we saw some proof.
In the South Australian State election, a candidate made history for two reasons.
First, Paul Collier, a lovely man who I was privileged to know, tragically lost his life on 9 March after suffering from a brain haemorrhage.
He was a fighter, an agitator and an agent for change. He was one of those natural leaders produced by the disability community, who inspire and unlock the talent of others.
He was the lead candidate for Dignity4Disability, a single issue party dedicated to pushing the disability cause.
His name remained on the ballot paper and Paul thus became the first deceased person to be elected in South Australia’s history.
More importantly, Paul became the first person elected to an Australian parliament on a disability platform.
The second person on the Dignity for Disability ticket, Kelli Vincent, who suffers from cerebral palsy and uses a wheelchair, will now take Paul’s seat.
With eight-and-a-half thousand primary votes, Dignity for Disability was well short of a quota in its own right (around 62,000 votes), yet this was enough to put Dignity for Disability in a clear 5th behind the ALP, Liberals, Greens and Family First.
I might add that Ms Vincent was elected on ALP preferences.
Paul Collier’s tragic death was front-page news in South Australia as, for the first time, disability issues were injected into an election campaign.
Ms Vincent will now have the Bully Pulpit of a seat in parliament to promote the concerns of people with disability, and to push their issues into the spotlight.
About one in ten Australians has a disability, and about one in five has a family member with a disability.
My experience is that the majority of Australians have a general, aspirational belief that we should do more for people with disability.
Word is filtering out about the lack of accessible transport, the lack of respite and accommodation, and the waiting lists for aids and equipment.
More children with disability are attending mainstream schools, and there is greater awareness among all parents that the school system does not always adapt to their needs.
It is also my belief that no political party ‘owns’ this issue, and that a big proportion of voters are genuinely undecided about who serves people with disability best.
What is needed is for the disability issues to move from the ‘important’ basket into the ‘urgent’ basket, from problems that we should deal with in the future to ones that must begin to be tackled now.
The struggle for disability rights in this country has been a slow one.
At times it has resembled trench warfare, a series of bloody battles to push forward a few inches and secure a tenuous foothold for the next push.
I think many in the disability sector believe it will always be thus, a case of slowly chipping away at established structures.
But there are also periods when things can change quickly, when societies begin to question their entrenched prejudices and attitudes, and the actions of a few leaders can have a tremendous impact.
When creative and dedicated minorities can remake the way we think and the way we live.
In the 1960s, the struggle for Aboriginal rights went from a battle to be counted in the census, through the right to vote, through equal wages, to the establishment of land rights within a decade.
In a time of social flux strong and united leadership persuaded the Australian public of the justice of the indigenous cause, to the point where 90 per cent of Australians voted in support of indigenous rights in the 1967 referendum.
A lot has improved for people with disability in the last generation, but it is still the case that the myths and fears the general public holds about disability are as limiting as the condition itself.
It is not my intention to blame the disability sector for this situation, or to ignore the fact that Governments must do more.
But I would wish to ask you this question:
If everything that you are doing now is perfect, then why are we where we are now?
I have seen the pride and energy of the disability sector and the work that you do, but I have also seen the opportunities lost through a lack of co-ordination.
I have the paths not taken, the door not opened, the key not turned, into a better way of being, a better way of befriending change.
There is no way you can change an asymmetrical power relationship without pushing, without acting together and without political power.
We need to work to create a climate where disability is taken seriously as an issue, not just by the sector, but by the general public.
We need to work to change the hearts of humankind, to make them understand it is us, not them, who are bound in our lives to be in the end disabled, but some of us get there earlier, and need to be helped up the steps they have to climb.
We need to appreciate how close we are to real change.
Just as we need to understand the enormity of the task that lies ahead.
What am I telling you?
We’re not there. Not yet. But we can be – soon.
I thank you.