Every Australian Counts

National Press Club Speech, 23 November 2011

Dr Rhonda Galbally
Chair, National People with Disabilities and Carer Council

I would like to acknowledge the traditional owners of the land on which we meet, the Ngunnawal people and pay my respects to their elders both past and present.

Two years ago I came to the National Press Club to deliver a State of the Union for people with a disability and their families in this nation.

Two years ago I told of another world that few people knew existed. A world where Australians were forgotten, abandoned, ignored.

Let me remind you of this world.

In this world you are only entitled to two showers a week. The rest of the time you are forced to lie in your own urine until someone can be found to shower you again.

You give up work, you give up going out, you are too ashamed to see your friends. You are isolated and alone.

In this world if you are a child who needs a wheelchair you will find the cost is not covered. 

Your parents hold cake stalls and raffles, they ask the local Rotary for help.

But by the time your chair arrives, you have already grown out of it.

In this world if you have a child with autism or any other disability, you face a bewildering maze of fragmented services. You go to one funding body after another. You have so many appointments, so many assessments; you spend so much time filling out forms on top of trying to care for your child alone, that you are exhausted. 

You give up trying to work. 

Australians with a disability and their families are currently held to ransom, having to accept anything that is offered even if it is the wrong equipment, or the wrong support, that isn’t at the right time of day and not doing the things that need to be done.

They are beggars.  And beggars have to accept anything that is dished out.

This is the world that people with a disability and their families endure all day every day, right now in Australia.

In fact the last great leap forward for people with a disability was thirty years ago, when we fought so hard to close the institutions that gave people life sentences, shutting them away from society from birth to death.

We mostly won the battle for deinstitutionalization. But we lost the fight for social and economic inclusion. 

So what has changed in the two years since I was here last? 

What has changed is hope.
 
Where there was once despair there is now hope. This is because a new era has begun.
 
An era that for the first time ever has all parts of the disability world working together for a common vision.

The engine room of the new era is a powerful coalescing of people with a disability, carers and disability service providers.

This engine room is called the National Disability and Carers Alliance and I would like to acknowledge the members of the Alliance here today - from Carers Australia, the Australian Federation of Disability Organisations and National Disability Services.
 
And from this Alliance has come the Every Australian Counts campaign.
 
Since January this year the campaign has amassed almost 90,000 supporters from every part of the country and from all walks of life. 

It has become a powerful grassroots movement of people who have put up their hand to say enough is enough and demand a fair go for people with a disability and their families.

Australia is the only country in the world to build an alliance of all those affected by disability. 

All united, all determined to wake Australia up to the scandalous situation of Australians with disabilities, and to ask for major reform of a failed system.

And now – for the first time – we are all optimistic.
 
We are optimistic because after an exhaustive eighteen-month inquiry, the Productivity Commission has handed down their final report in August this year. By the way this is the hard-nosed Productivity Commission who aren't known for being bleeding hearts.

And they recommended introducing a National Disability Insurance Scheme for all Australians.
 
I want to acknowledge the excellence of this report and particularly the leadership work of Commissioners Patricia Scott and John Walsh.
 
Just ten days after receiving this landmark report the Federal government announced it would introduce the National Disability Insurance Scheme.
 
And nine days after this announcement all Premiers and First Ministers from around the country met at the Council of Australian Governments - COAG and all agreed to work together to implement the National Disability Insurance  Scheme.
 
Given the history of disagreements at COAG this was indeed an extraordinary commitment.
 
Since that time the States and Territories have agreed to work with the Federal government to speed up the full nation wide implementation of the National Disability Insurance Scheme from the seven years recommended by the Productivity Commission to six years.

To the people around the country who are in desperate need of support this is very welcome news.
 
This is the quickest turnaround response of any government I have ever seen to a report of this nature.

All governments in Australia have now decided together that we need to transform how we treat people with a disability and their families.
 
And not only all governments, but all parties. 

In this often fractious political environment, the National Disability Insurance Scheme has received strong bipartisan support.

Why this unprecedented level of support from all political parties and the rare State and Federal cooperation? 

Because they all know the system is broken and must be fixed. 

They know that people with disabilities and their families will not give up. 

They know that it is wrong to allow this area of gross neglect to continue. 

And they know that a National Disability Insurance Scheme will add significantly to the productivity of Australia.

The transformative potential of the National Disability Insurance Scheme is enormous, but it is at heart a simple idea.
 
1. First create a consistent and secure national pool of funds. And from these funds will be drawn the necessary support for people with a disability and their families.

2. Second allow people with a disability and their families control to choose the services and supports that best suit them and their needs. Allow them the dignity that comes from choice and control.

3. Third create a system that is not only effective and efficient, but is also flexible and responsive to individual needs.

4. Fourth build a system with the incentive to get people what they need, when they need it so that they can maximise their opportunities to participate as fully as possible in every aspect of Australian society.  
So for example:

Home modifications and personal support and domestic help will be available and provided straight away. This will mean that people will no longer be left to languish in hospital, or sent to a nursing home, or abandoned in respite care beds because their families can no longer cope.
 
Wheelchairs and other equipment will be supplied as soon as they are needed. People with a disability will then be able to return to work or get a job or keep a job.
 
Early intervention will be just that – early and enough for every child with a disability who can benefit from it  - so that all young children with a disability can reach their full potential and have every opportunity to properly participate in an education so necessary for their future.
 
Young people with disabilities will be able to make decisions about who to live with, where to live and how to live. They will be able to leave home and move to as independent an adult life as is possible.
 
And so the fears of aged parents who are haunted by what will happen to their older adult child will finally be put to rest.

The National Disability Insurance Scheme will allow families to return to being families - mums and dads, brothers and sisters, partners, husbands and wives, who will of course still care, but The caring role will no longer dominate their lives.
 
It will mean that mothers and fathers will no longer find their relationships fractured by the stress.
 
People with a disability will never again be seen as burdens on families.

I know what a hurtful and divisive issue this had been. People with a disability hate their characterisation as burdens – it strikes at the very core of our being.
 
And yet the reality is that this is the experience of carers when they are left to do everything, with no help and no hope. Without support, the relentlessness is hard to bear.

But the peace of mind, which will come from the National Disability Insurance Scheme, is not just for those who already have a disability. Like Medicare, it is for every Australian.

Every Australian will be able to rest easy, knowing that they are certain of reasonable care and support for them or their family member who may become disabled

This is important because disability can occur at any stage of life from many causes.

From birth, from sport, from cars, from falling of a ladder, from stroke, Parkinson's, MS, and many other illnesses.

This transformation of the landscape does of course come with a price tag. The Productivity Commission estimates that the system is underfunded by approximately half. That means an additional $6.5 billion by the final rollout year of 2017. This is for an effective and sustainable system to meet the social and economic needs of the nation.
 
The National Disability Insurance Scheme is an investment in the potential of people with a disability. By providing them with targeted and timely supports, many will be enabled to enter the workforce and so help meet the significant productivity challenge which face Australia.
 
And by providing people with appropriate support, the National Disability Insurance Scheme will also allow families to participate more fully in the economy and the community.

Many new jobs will be created, new aids and equipment will be manufactured, new services will be developed.
 
So it is for all these reasons the Productivity Commission concluded that the economic benefits of the National Disability Insurance Scheme far exceed the costs.

But in the end, that may not be the greatest benefit. 

It will mean that people with a disability will become fully citizens of Australia, rather than objects of charity. They will be able to participate in the community, becoming neighbours, colleagues and friends.

In the process they will become people, seen as worthy of investment. 
As Australians with potential. As valuable, contributing citizens of this country.

The National Disability Insurance Scheme means that Australians with disabilities and their families will move from begging to dignity.
 
They will move from charity to human rights.
 
Australia will leapfrog from being one of the worst OECD performers on disability, into a leadership position.

The National Disability Insurance Scheme is this generation's great reform - benefitting every Australian.

Every Australian is a stakeholder in the development of the National Disability Insurance Scheme.