I acknowledge Wadawurrung Traditional Owners of this land and all Aboriginal and Torres Strait Islander People.
I want to start by acknowledging the important role that so many people in this room have played and continue to play in the rollout of the NDIS.
The fifth birthday of the Scheme is, I think, a time for us all to remember and celebrate the story of the NDIS.
How it came about.
Why we need it.
And why we need to fight for the NDIS that we all hoped for.
WHY WE NEED THE NDIS
You all remember that the old system of disability support was broken.
It was failing people with disability and their families.
People with disability in this country rightly wanted adequate support so that they could pursue their dreams and aspirations in life.
I will never forget the promise that we made to those elderly parents of adult sons and daughters with severe and profound disabilities, who lie awake at night anxiously thinking: ‘who will love and care for my child when I no longer can’.
So we can’t afford to forget the point of the NDIS.
We can’t afford to forget that the core mission of the NDIS is to improve the lives of people with disability.
People like Lisa Loader from Western Sydney.
Lisa is a single mum of three children.
Her 14-year-old and eldest child Austin has a rare chromosomal disorder, which includes Duane syndrome – which leaves him with a turned eye and blurry vision.
Lisa says that the NDIS has really worked for Austin and her.
She admits that it was difficult and hard to set up Austin’s NDIS plan.
But now Austin is getting regular therapies that he was missing out on before the NDIS.
As a result of the support Austin gets through the NDIS, Lisa has been able to complete study and work more hours.
I share Lisa’s story on the fifth birthday of the NDIS, because some people are starting to say the NDIS has lost its way.
THE LONG FIGHT FOR THE NDIS
On this fifth birthday it’s so important to remember the long fight for the NDIS - a fight that so many of you were part of.
The idea of disability care and support being delivered via an insurance rather than a charity or welfare model was first looked at by the Whitlam Government.
In 1974, Whitlam declared:
“Australians should not have to live in doubt or anxiety lest injury or sickness reduce them to poverty. We want to reduce hardships imposed by one of the great factors for inequality in society‚ inequality of luck.”
Legislation for a disability insurance scheme was before the Parliament when the Government was removed in 1975.
It never saw the light of day.
People with disability and their families had to wait 40 years for another government to take up the fight.
In 2008 around half of all people with severe or permanent disability in Australia were getting little or no support.
This fact needs to be emphasised – so many people were getting little or nothing to help them with a decent life.
10 years ago, when I was a Minister in the Rudd Labor Government, Brian Howe and Bruce Bonyhady came to see me, and Bill Shorten who was then my Parliamentary Secretary.
They proposed that we look at an insurance approach for funding disability care and support.
That was 10 years ago –big, lasting reforms take time to implement.
Running parallel to this - people with disability, their families and carers and service providers were getting organised.
Rhonda Galbally, together with other activists recognised that they would be stronger if they came together in an Alliance with carers and service providers.
This was a huge decision as each of these groups had very different perspectives about how people with disability should be supported.
Then Every Australian Counts was launched in 2011.
Every Australian Counts is a group completely outside government and with savvy people running the campaign for a new approach.
In fact, the very first Every Australian Counts rally was held here in Geelong in 2011.
The Geelong/Barwon region has always had a strong and active disability community – and it’s so fitting that we are all here today.
By August 2011 Bill and I got Prime Minister Gillard to agree in principle to the recommendations of the Productivity Commission Inquiry to establish an NDIS.
The PC did an outstanding job.
They showed what you all knew – that the old system was broken.
Importantly they showed that a crisis driven scheme would actually be more expensive than an insurance-based model.
Those who complain about the cost of the NDIS should remember this.
At the end of 2012, Julia Gillard took the legislation to create the NDIS into the Parliament.
The legislation for the scheme was supported across the Parliament and the day it passed was one of the most amazing days I’ve seen.
REFORM IS NEVER EASY
It’s true that in recent months, the enthusiasm and excitement of 2013 has been replaced – too often – by frustration and disappointment.
Unnecessary funding debates have taken their toll – unnerving people and distracting from our primary focus: making the NDIS work.
The NDIS has always been fully funded. It should not be used as a political football, and I hope those days are behind us.
I get many emails and phone calls from participants and service providers who say they feel let down by their day-to-day experience of the NDIS.
The NDIS is a big change for people with disability, services and for the Agency and its staff.
Moving away from a charity, block-funded approach – to one where people can decide themselves about what they want, and to a long-term investment in people.
And there’s no question there are clearly issues that need to be fixed.
The NDIS isn’t yet working for everyone.
There are many people whose lives have been improved.
And an estimated 40,000 people who had not received any support before from either Commonwealth or state and territory government – are now inside the NDIS getting what they need.
This point is too easily lost.
The NDIS will provide support to those who never had it.
Many of these people are children, who will likely have significantly changed life outcomes as a result of the NDIS’ investment in them and their families.
So that’s the good news.
The bad news is that for too many people with disability the NDIS isn’t working for them.
The problems with the rollout of the NDIS are going to require hard work from everybody – the NDIA, advocates, service providers, people with disability and of course government – both at the state and commonwealth level.
It requires us all to keep fighting for the NDIS to be what it was always meant to be.
We all know the planning process isn’t working as well as it should.
That people with disability want to see a draft version of their plan before it’s approved.
Some participants are getting plans that are simply unrecognisable from their planning meeting.
People really want to be able to see their plans as they are developed, to correct mistakes and catch problems early.
It’s no surprise that this was the number one issue to be raised in the Every Australian Counts survey on how to fix the scheme. Just get this changed!
Unfortunately the NDIS has become a bureaucratic nightmare for some people with disability.
People with disability and their families, service providers want a people centred organisation not a bureaucratic one
Now, I say this not to diminish the hard-working staff at the NDIA.
But I think it’s important to recognise these problems undermine the trust and common purpose the NDIA relies on.
People with disability, family members, and providers do not want to wait on the phone for hours.
Or have emails going unanswered.
Or not have anyone locally to engage with and help fix problems.
As the Productivity Commission observed last year many of the problems are being created by a lack of staff and inadequate training.
The staffing cap must be lifted.
More dedicated staff are needed to do the job properly.
To fix the problems with planning and reduce the flood of decision reviews – running at a rate of nearly 100 a day according to the Commonwealth Ombudsman.
The IT system also remains a major cause of frustration.
This must be fixed, and urgently.
I have also heard from many people about the serious problems with process for services.
I’ve been approached by some providers who are considering getting out of disability services in the next 12 months unless changes to pricing are made.
We need a viable disability sector with high quality staff and that’s only going to come about if we get the pricing right.
Similarly we need to be looking forward to the really big challenges of workforce and quality – which will determine whether the scheme delivers long-term.
Yes. This is a great opportunity to create new jobs, but the staff will need training and decent pay and conditions.
Underutilisation of NDIS plans is a growing source of concern.
This means far too many people with disability that already inside the NDIS aren’t getting the services and supports that their NDIS plan says they need.
Ensuring that participants get quality plans, timely reviews and quick access to local services must be the top priority.
For too many people the promise of better housing is yet to be fulfilled – that this is a very big piece of unfinished business.
Governments and the Agency need to make sure more accommodation is built, not spend years obsessing over complex financial instruments.
We’ve got to put the heart back into the NDIS.
We’ve got to put people with disability back at the centre of the NDIS.
We’ve got to make sure that the NDIS fulfils its promise and improves the lives of Australians with disability.
Friends, the next three years are of critical importance to the future success of the NDIS.
We don’t want to run the risk that it may never fulfil its potential.
We can’t afford for that to happen.
As you know, I am so passionate about the NDIS!
And I know you are too.
Lets make sure that the dreams of people with disability, their families, carers and disability advocates