Speech at the Sydney Institute
Introduction
I’m grateful to the Sydney Institute for inviting me to speak today.
Let me begin by asking you a question:
What is a person worth?
What is your value? What is mine?
Are we all of equal value?
Or are some of us less equal than others?
Am I less equal if I cannot live where I want? Or go where I want?
Am I less equal if I am segregated?
Am I less equal if I can’t get a job interview?
Am I less equal if I can’t complete my education?
Am I less equal if I can’t enter a building or get on a plane or train?
What if I can’t even cast a private ballot in a State or Federal election?
If you are one of the One-and-a-half million Australians with a disability – or the 600,000 friends and family members who are their unpaid carers – you know the answer all too well.
The answer is: Yes, I am less equal
Yes, I am not valued according to my potential, but according to my limitations.
Yes, my voice is not heard sufficiently in political discourse
Yes, I am a second-class citizen.
Yes, I am less equal.
It is still the case in our very lucky, and very special nation, that the achievable aspirations of the average Australian remain out of reach for a person with disability, or their carers.
A good education, a steady job, owning a home, a role as a valued and respected member of a family and a community, followed by a comfortable retirement in a safe and peaceful place.
All of those everyday aspirations remain a distant goal for many people with an impairment.
Over the last thirty months, as Parliamentary Secretary for Disabilities, I’ve seen that what they get instead, by and large, is a life in the margins.
A struggle to find a school that will accept you, difficulty travelling to a university.
A struggle to find an employer who’ll give you a second-look for an interview, a smaller pool of rental houses, a life of extra expenses and of isolation and frustration.
That is why I have come to see that life with disability is the last frontier in practical civil rights.
An issue that does not just challenge the democratic principles upon which our Federation was founded.
But raises generational challenges for the future prosperity of our nation.
I want to make the case that there is a practical civil rights agenda around disability, and the inclusion of people with disability as full members of our society. That it is not special pleading or charity, but essential for Australia.
Disability is not just a test of our national morality, but a test of our national sustainability.
Because, sooner or later, Australia’s governments, industries and communities must address the facts of disability or risk the kinds of social and economic hardships that are now being experienced by the nations worst-effected by the Global Financial Crisis.
Ladies and gentlemen, this is no exaggeration.
The stakes are that high – the human rights are that low.
People with disability lack power in our society, they lack organisation and they lack a voice.
There is no union for them, there are no powerful disability lobby groups.
There is not even an equivalent of the Choir of Hard Knocks, that has personalised the problem of homelessness.
there is no acceptable face, packaging or spokesperson.
There is no single image of an MCG full of the lame, the halt and the blind, singing a song of demand for our help.
A hero of mine, George Orwell, once said that the problem with being poor is that it takes up all of your time.
This goes double for having adisability
Disability makes you poor, and on top of that you have to expend your energy dealing with systems that were not designed with you in mind.
People with disability spend so much energy surviving, that they have little left to start thriving.
The disability sector does a fine job in patching immediate holes in our creaky system, but it has not been able to convince the rest of the nation that this important issue is also an urgent issue.
In my view there can be no real change without disability becoming an urgent political issue, and wielding the political clout that its numbers demand.
With that in mind, I want to do three things today.
- I want to explain why Disability matters to us all.
- I want to explain why – as a nation – in business, in the community and in government – we need to change the way we think about Disability.
- And I want to explain why it’s in the national interest to bring Disability in from the cold and make it a mainstream concern.
1. Why Disability Matters
Before I go into why disability matters, let me give you one example of how it struggles to gain mainstream attention.
Recently, before June 23rd, I was invited to appear on the ABC TV program Q&A.
On the night, though, not one question was asked about disabilities – because of course, four days before the program, Julia Gillard became Prime Minister.
When – in the dying moments of the show – I broached the issue of a national disability insurance scheme and stated that disability was at least as important as other questions of national politics I was accused of changing the subject – of “spinning” and ‘giving a line’.
What is the point of that story?
Disability is not a mainstream media issue.
There are notable exceptions in the media, indeed today in the SMh and the Daily Telegraph – but – generally – disability is seen as an issue outside the realm of everyday life.
It is something that doesn’t concern “us”
And it is therefore quarantined as a subject for one-off specials or sensationalism, tragedy or heroism, but seldom for sustained investigation.
To use the media vernacular: disability just isn’t sexy.
Let me tonight tell you why disability should be sexy.
According to the latest statistics from the Australian Bureau of Statistics, there are about 1.5 million people with a severe or profound impairment.
That means that they need assistance with one of the core functions of living, be it speaking or moving around.
Half of these Australians are under the age of 65.
This year, State and Federal governments will spend about $6 billion on care and support for those under-65s.
This system is propped up by the unpaid work of hundreds of thousands of primary carers – many of who are ageing parents.
It is a system in perpetual crisis.
But the crisis is set to become a catastrophe as our population ages.
Many carers simply won’t be able to shoulder the burden.
As a consequence, in 10 years, the cost of supporting people with a disability aged under 65 is projected to jump by 66% – to $10 billion a year in current dollar values.
And in 20 years, it will jump to $17 billion dollars.
Currently the states are spending four billion on services, in 20 years they will need to spend $11 billion just to keep pace.
And that is just the beginning.
- Every year about 30,000 children under 15 acquire a health condition potentially leading to a disability.
- there are now an estimated 180,000 children under 15 with a severe or profound disability.
- Every year nearly 10,000 Australians under 30 enter the Disability Support Pension or DSP. Most stay on DSP for life.
- there are now nearly 800,000 Australians receiving the DSP at all ages, costing nearly $12 billion per year.
- Every person with a disability aged 20 who enters and stays in the mainstream workforce rather than spends their life on DSP
- Saves the government nearly $600,000 in service outlays,
- Pays taxes,
- And has less need for government-funded care and support
And by the way, they’ll have a better life experience.
The inadequacy of the disability system is impacting on other areas of critical need – such as acute health and corrections.
Our prisons have become an institution of last resort for many people with an intellectual disability.
People with intellectual disabilities are scandalously over-represented in jails.
It’s been estimated that in NSW alone over 20 per cent of current inmates have an intellectual disability.
Too many young people with disability remain in an age inappropriate nursing home, rather than with people their own age. We have reduced the numbers but there are still 7000 people under-65 in aged care, because there is nowhere else for them to go.
People with disabilities are often ‘parked’ in hospitals until more suitable service arrangements can be found – a very expensive way to support people.
One Community Care and Participation project in the NSW Lifetime Care and Support Authority reduced hospital lengths of stay by up to 83 days by opening up community options in some categories of severe spinal cord injury, saving nearly $100,000 per patient.
What does this tell us?
That unless we do something now,
- More and more Australians will be forced to drop out of the workforce to care for loved ones,
- Our economy will be hamstrung by an acceleration in the fall of labour force participation rates,
- State Governments will be driven to the verge of bankruptcy by rising disability services costs,
- And Australians with a disability will become increasingly marginalised and segregated …
- .. with there being a very real risk of a return to the Dark Ages of institutionalisation.
What if all the Carers went on strike?
What if they costed themselves as employees and asked to be paid?
they won’t, because love drives them. But we should support and value this love of these parents and siblings and children not take it for granted.
As dire as things are, real progress has been made since our Government was elected at the end of 2007.
I want to acknowledge the contribution of Jenny Macklin in achieving this.
- We’ve doubled the amount of money available to the States through the NDA – taking it to $5 billion over 5 years – and we’ve introduced better benchmarking.
- We’ve increased Carers Allowances and the Disability Support Pension by almost $100 per fortnight.
- We’ve changed the Disability Employment Network – and ended waiting lists for people with disability who want help to find open employment.
- We’ve created the Helping Children with Autism package, for the first time giving funding – $6000 per year – to parents of children with autism up to the age of 6.
- the first Access to Premises standards – delivered after a decade of delay.
- We were among the first developed nations to have signed the UN convention on the Rights of People with Disability and ratified the optional protocol.
- And, most importantly, we have established a Productivity Commission inquiry into the possibility of a lifetime care scheme, or social insurance scheme in Australia.
These changes aren’t enough.
Not by a long shot.
In short, the current model cannot cope.
I have spoken to the Prime Minister about this, she has great empathy and understanding of the real lives people with disability are living now.
She has the vision to understand why more reform is in the national interest, and why doing nothing is not an option.
Tonight I suggest that we need a new approach.
A new model that’s all about driving better and more coordinated service delivery and outcomes, facilitating community and employment participation by people with disabilities.
By 2030, according to the Australian Institute of Health and Welfare, there will be 2.3 million people with disability.
But there will be no increase in carers, in fact there is likely to be a drop, as elderly parents of children with disability become too old to look after their kids.
There is a tsunami of need on the horizon.
Unless we change our thinking we run the risk of being swept away.
2. A New Way of Thinking
To shift our thinking away from old ideas of and attitudes towards disability is a big task.
It will require the efforts of the whole of society.
We need to admit that the way we live and work – from maternal child and healthcare centres and schools, to shopping centres and public transport, to housing and workplaces – has been designed without consideration of the needs of people with a disability.
For instance, in the upcoming Federal election the ALP has two blind candidates – Tony Clark and Steven Hurd – standing for House of Representatives seats in Victoria.
Tony and Steven are strong candidates and would make excellent MPs, but there’s a problem …
.. they can’t cast a secret ballot.
The secret ballot is a cornerstone of the democratic system. It was first introduced in Victoria 1855 but, 155 years on, voters with a visual impairment still have to trust someone to fill out their ballot paper for them.
The secret ballot should be universal by next year, but why have one segment of the community had to wait a sesquicentenary for a basic democratic protection?
I will talk about what the broader community – including business – can do to make a difference in Disability.
Before I do, though, I want to explain my personal thinking behind the proposed National Disability Insurance scheme.
Last year, we announced that the Productivity Commission would conduct an inquiry into the long-term care and support of people with disability – including an investigation of a National Disability Insurance Scheme.
This is not going to be just another inquiry.
We’ve had a lot of inquiries into the problems in disability, but this is the first time we’ve had an inquiry into one of the solutions.
The PC released an issues paper in May, which made the case for major changes in disability.
The Commission had this to say about the Disability system:
“the key question … is not how bad the current system is – nearly everyone thinks it needs to be overhauled. What we want to know is how to build a good system.”
And:
“the Commission is starting from the position that the broad rationale for some form of mandated contributions to provide disability support is soundly-based, whether through taxation, compulsory contributions to insurance, or other means. the key question at this stage is how best to design a system that achieves that goal.”
After all, demand for services is growing at a rate of 7% a year.
Much of the discussion about an insurance scheme will be about how much it will cost, and how it will be funded.
I don’t intend to pre-empt the PC on those issues.
I can not predict either the Commission’s findings nor the Government’s response.
But I want to make the point that we are spending a huge amount of money on a system that is not working.
Australian governments already spend around $23 billion a year in total on the disability welfare system, not just the $6 billion in services I spoke of before.
- Around $8 billion goes towards payments to community care and support providers, funded by Federal and State Governments.
- Nearly $3 billion is for payments to family and other informal carers;
We are pouring our water into a series of leaky buckets.
Sticking with the current system is a false economy.
I’m interested in whether we shift to a system that intervenes early, that offers individualised support and care, and that follows a person throughout their life will deliver savings in the long-term.
More importantly it will ease the relentless anxiety faced by people with disability and carers about their future.
What would an NDIS involve in practice?
I’d like to use the example of the good system we have in NSW, or the Traffic Accident Commission in Victoria for people who have been seriously injured in a motor vehicle accident.
The schemes pay for the rehabilitation, treatment and care of people in car accidents.
This includes medical and dental treatment, rehabilitation and respite care.
It covers home and vehicle modification, aids and equipment as well as vocational training and education.
I’m sure the schemes are not perfect and cannot pay for everything that a person who has been paralysed or suffered a head injury would want.
But at least there is a structure and a pathway for that person to enter as they deal with the shock and pain of their accident.
they are not told to come back next year when we have more money.
This scheme, for the limited pool who qualify, I suggest is an island of optimism in an ocean of pessimism.
But compare this with the situation of a person who suffers an identical injury in an accident at home, or as a victim of family violence or a chance swimming accident.
Unless they are able to win in the lottery of a court case, if in fact they have a compensable injury, they will fall back on the patchwork system that is already beyond capacity.
Compare the motor vehicle accident system with a couple whose 18-month old son has been diagnosed with autism.
They walk out of that doctor’s office and they are on their own.
They are left disoriented, grieving and scrambling to access services – speech therapists, psychologists, all the help that you need – and indeed to access long-term medical advice for their child.
Parents of kids with autism have told me they get a degree from Google University, because that is the only place they can go for information.
We know that with autism good early intervention does make a huge difference for life.
So the clock is ticking and opportunities are slipping away from the moment of diagnosis.
Even if the parents manage to find some help, they find the earth is flat.
Back in the 13th century told you would sail off the edge, if you sailed too far.
We know now the world is round.
But for parents of a child with a developmental delay your world is still flat.
You sail off the end of the world again when you try and find early intervention services.
You sail off the world again when you look for school in the special or mainstream system in Primary schools.
You sail off again when you find a secondary school, and when you’re made to feel like a bully for asking for support and resources.
You have these collisions, these departures, this need to start again at every stage of the life-cycle of your child.
To me, the question that the Commission should answer is how do we move the level of care and support offered to the child with autism to something approaching that of the person injured in a car accident in NSW or Victoria?
How do we ensure that child with autism – or Down’s Syndrome, or a hearing or vision impairment – has the best experience they can have at school?
Just because you have an impairment doesn’t mean you can’t learn.
How do we ensure they get the best chance they can have to get a job?
Just because you have an impairment doesn’t mean you can’t work.
The chance to live a life that is as independent and satisfying as possible?
To ensure you’re not defined by your inability but the complex nature of your personality and all its marvellous abilities.
Why should the quality of care depend upon where and how the impairment occurs, not the needs created by the impairment?
3. Disability: A Mainstream Concern
There’s no doubt that Government has a lead role to play in the creation of a new approach to disability, through initiatives like the proposed NDIS …
.. but this is an issue that’s too big for government alone.
We need the mighty Australian private sector to buy in.
Private enterprise triggers 7 dollars out of every 10 in Australia – and can therefore drive enormous change.
Businesses also should appreciate that focusing on disability is good for business.
Because I believe a Disability Insurance Scheme has the potential to create a multi-billion marketplace for goods and services specifically designed to cater to the needs of people with a disability.
For example, earlier this year the Government announced the first set of national Access to Premises standards. That’s for public buildings.
It took 10 years of complex negotiations to get these standards in place. That’s longer than the Trojan War.
They covered public buildings, but not private homes.
Late last year I set up a dialogue on the issue of Universal Housing Design – which involved architects, the master builders, the property council and the real estate industry as well as the leaders from seniors groups and the disability world.
The adversarial approach hasn’t worked and it takes too long. We don’t have ten years to wait.
We were able to see the role of government not as the regulator, but using its authority to encourage the stakeholders to develop new standards and approaches to residential housing design.
Today out at Ropes Crossing in western Sydney I launch launched the result of that dialogue – a voluntary Livable Design Strategy for private homes.
This has set an aspirational target that all new homes be built to an agreed standard by 2020.
for those of you who don’t know, Universal Housing or Livable Design is a simple way of building homes so that they can be lived in easily by people with disability, or the frail aged, or just those with a temporary mobility impairment.
Wider doors, reinforced bathroom walls for future shower rails, are easier and cheaper to build now than to retrofit.
Moses did not come down from the mountain and say the doorframes of Australian houses should be 700mms wide.
Over the next ten years we’ll be moving them to 850mms wide – and as someone pointed out this will use less bricks so it will make homes cheaper!
The case for building homes where a person can spend their whole lives is strong.
The case for building a home that can be on-sold to the widest range of possible buyers is very strong.
I think universal design is a bit like environmental or green design was 20 years ago.
Tthe case for it is strong, but it has not been made to the consumer.
There are no rating systems or stickers telling you how adaptable your home will be when you get older, have a child with a disability, get injured or have friends with disability over for the night.
Industry realises this, they are ahead of Government, and I think this is why the Property Council, the HIA, the MBA and other groups have been so willing to be involved in this process.
We hear of the “Green Dollar” or the “Pink Dollar”, what we need is to add the “Disability Dollar” or the “Livable Dollar” and make companies realise that people with disability are an untapped market.
They are consumers not charity, opportunities not costs.
We need to turn around the thinking that says providing products or services to people with disability.
There will be some areas where regulation is necessary, but I believe we can do most of our changes without the heavy-handed regulation.
Where companies embrace new technology and creative thinking and understand they can make a profit by providing services adapted for people with disability.
There is also a marvellous productivity dividend for each 10,000 full time carers that return into the workforce.
It is estimated for every carer back into work, an additional $50,000 per year is generated.
In conclusion, let me say this:
Before I was elected to politics I spent 14 years in the union movement and I thought I knew my country, and I travelled to many parts of it, and saw some egregious examples of unfairness.
I didn’t.
The past thirty months have opened my eyes.
Hidden in plain sight are more than two million Australians who are citizens in name, but – in reality – they are more like exiles in their own country.
We wouldn’t build a wall around a city of 2 million Australians and say you will get less than the rest of the country.
Too many Australians are less than equal citizens.
It’s shameful. But I also think it’s silly and it’s a loss of Australian potential.
Now is our chance to end that inequality and, in the process, secure the future prosperity of our nation.
Thanks very much for listening.