You can read VALID’s submission to the Joint Standing Committee on the National Disability Insurance Scheme here.
It’s been a long time since I spoke at a rally. The last was in support of the National Disability Insurance Scheme (NDIS), over ten years ago. We were fighting for a disability support system that would live up to the vision of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) and provide people with disabilities with support to live as equally valued citizens.
Before that, throughout the ‘90s and into the new century, we rallied against the inefficiencies of the previous Commonwealth State Territory Disability Agreement (CSTDA). We railed against the broken system, which saw federal and state governments constantly arguing and passing the buck over their responsibilities.
Before that, from the ‘80s onwards, we fought for the closure of institutions and the end of segregation. In 1988, we rallied outside Caloola to demand the closure of that terrible institution, and we marched on Parliament to demand proper funding for community-based services.
This week, the Joint Standing Committee on the NDIS continued to hear arguments for and against the introduction of the NDIA’s Independent Assessments. Like many others, I listened in awe to the statement provided by Dougie Herd. I was struck by his profound observation that these so-called reforms are having the complete opposite effect of taking us forward. They are taking us Back to the Future.
The things we have fought so fiercely against in the past are all staring us in the face again. Decisions are being made by powerful people, with no understanding of their impact on the people they are supposed to be serving. Deals are being done to satisfy vested interest groups. Money is being wasted on consultancy groups without accountability or transparency. People with disabilities are being categorised and classified to meet the needs of the system. Powerful empires are being built on the back of people without power. All over again.
Dougie’s comment reminded me of another campaign rally speech back in the early ‘90s. The late Katie Ball, a hero of the disability rights movement, was involved in a protest against the use of heritage listing to excuse the owners of a Geelong-based building from having to install ramps and lifts. She said, “Just because they discriminated against us a hundred years ago, that doesn’t give them the f*cking right to discriminate against us now!”
We can draw a straight line between what Katie Ball was fighting for then and what we are fighting for now. We can see the progress of that line. We have had a glimpse of a world where people with disabilities are viewed as individuals with goals and aspirations like everyone else, with the right to participate fully in the life of the community.
We can see we have come a long way. We can see the vision of the UNCRPD guiding us forward. We can see the enormous difference the NDIS has made to the lives of thousands of people across the country. We should never take that for granted, nor forget how great the NDIS is when they get it right.
And yet, here we are. Looking on in horror as they threaten to get it so dangerously wrong.
The NDIS was supposed to be about escaping the mindsets and attitudes of the past, to throw off the shackles of prejudice, segregation and congregation – to realise the full potential of people who have been historically under-valued and under-estimated.
The NDIS was meant to put Australia on the right side of history, supporting the push towards a society in which people with disabilities are full participants, not parked outside the mainstream, but firmly held and embraced, as members of families, neighbourhoods, communities, workplaces and of life itself.
And yet, here they are dragging us back to the past. Prejudice disguised in new and ugly forms, with bankers, businessmen and insurance actuaries devising new ways to depersonalise people with disabilities, to clump and cluster them together, anything but to value them as unique individuals with their own goals and their own unique needs for support.
When you stop viewing people as individuals but as ‘personas’ to be put into funding boxes, those of us with a sense of history know where all that is going to lead. If it is OK to scrap the principles of person-centred, goals-based planning, then next it will also be OK to do away with choice and control. God knows, they are already attacking self-determination. And before we know it,five, ten, fifteen years down the track, those funding boxes will become the new institutions of the future.
History has shown us what happens when we allow people with disabilities to be labelled and grouped according to arbitrary categories simply for the convenience of government. The moment we stop fighting for the right of people to be regarded as individuals, we open the door to congregation, segregation, institutionalisation, and oppression.
Am I going too far? Does that sound alarmist? I wish that were the case, but like people with disabilities and families across the country, I have lost all trust and confidence in where the NDIA is taking us.
The NDIA trusts no-one, and in return, nobody trusts the NDIA. Why? The NDIA did not trust the states from the outset and did everything they could not only to restrict their role, but to ignore their experience in running disability systems and services. They do not trust participants and their families to decide their own goals or to speak to their own needs. They paint them as greedy, so they demand quotes and assessments to prove every last thing, and then they ignore the reports when it suits them. They do not trust service providers who they say are overquoting, and they do not trust allied health professionals who they say have sympathy bias. They do not even trust their own planners and delegates to make the decisions that they were employed for. According to the NDIA, everyone’s a liar.
The NDIA has concealed and manipulated the truth. They have destroyed trust. They have misquoted academics, kept secret data that should be public, and refused to allow public scrutiny and independent evaluation of the secret black box that will make decisions about funding that make or break our lives.
The NDIS we fought for was designed to be a lifetime support scheme. Insurance for all Australians. Like Medicare. Instead, the current administration treats the NDIS as if it were a business operating on a year-to-year budget. They make decisions for the short term. The NDIA are not calculating the money saved if people with disabilities and their families are properly supported.
NDIS Independent Assessments are not independent at all. The NDIA has chosen who will do the assessments and they are paying per assessment. That’s not independence. That’s a scam and a con. These NDIS Independent Assessments are all about capping funding and doing everything possible to kick people off the Scheme. And it’s already started. Already this year, before NDIS Independent Assessments have even started, VALID’s advocates have seen plans being slashed for months with no reason given. The NDIA’s razor gang is already hard at work.
The NDIA is trying to make a shiny new thing with rusty old tools. It will not work. Coalition government ministers, and the NDIA CEO, are obsessed with automation at the expense of everything and everyone. This is the government that brought us Centrelink Robodebt, who have bungled the COVID vaccine rollout for people with intellectual disability, and who now want us to accept Roboplans.
People with disabilities and their families are afraid. They thought the NDIS – which is only for people who have already proven they have a permanent and severe disability – would be there for them for life. Instead, elderly parents are being forced to go to the Administrative Appeals Tribunal (AAT) to fight for the funding they were promised. In the process, they face being savaged and terrorised by NDIA lawyers for daring to challenge the Agency, and are terrified that their adult sons and daughters will be evicted from their homes and left without support.
The NDIA wants to measure ‘functional impairment’ but the NDIS Act itself requires the Scheme to measure whether the government is delivering on its promise that Australians with disabilities will be supported to pursue an ordinary life, not whether they can make a cup of tea! Social and economic participation! That is the measuring stick chosen for the Scheme by the founders of the NDIS. That is what needs to be measured. Ordinary life outcomes!
Over the past week or so, we have heard dangerous rhetoric from the federal government, including the Prime Minister himself, and NDIS Minister, and even the NDIA, that some participants are too expensive, and that anyone receiving over a million dollars of NDIS funding is costing the taxpayer too much. It is dog whistling, just like former NDIS Minister Stuart Robert’s constant howling on the sex therapy issue. It is contemptible stuff.
VALID provides advocacy support to many of the participants that are in the government’s firing line, people with intellectual disability and autism who have highly complex support needs, and we have seen the amazing difference the NDIS has made to their quality of life. For the first time in their lives, they have access to the expertise and support they have always needed and never received until now. It is disgusting to hear the very people who should be celebrating their achievements so intent on maligning and denigrating the people this Scheme was supposed to be here for.
This is not the first time people with disabilities have been called leaners, scroungers, and a burden on government. But you do not hear the same scape-goating when it comes to Medicare. The government does not tell the public that it costs too much to pay for uncle’s emergency heart surgery or your grandchild’s neonatal care, because they know the Australian public expects them to just do it.
Because Australians believe in taking care of each other. Because they know the same safety net will be there for them and their family members if they ever need it. That’s called empathy, and it’s exactly why the Australian public supported the NDIS in the first place. Because Australians care.
In August 2020, after representing VALID and Inclusion Australia on various NDIS committees trying to get a handle on the Agency’s plans for Independent Assessments, I came to the conclusion that the people running the NDIA do not have the best interests of people with disabilities or their families at heart. They dress it up in all sorts of clever ways, but the bottom line is that they are bent on dismantling and robotising the scheme that we all fought to achieve.
VALID therefore withdrew from all communication with the Agency on NDIS Independent Assessments because we simply do not trust them. And nothing they have said since persuades me that we got it wrong.
So, once again, I say to the new Minister for the NDIS, Linda Reynolds:
- Stop the Independent Assessments debacle before it causes further damage. All the problems they tell you it will fix are only going to be made worse, so cut your losses while you still can;
- Cancel the Independent Assessment contracts and put those hundreds of millions of dollars back into the Scheme to do the job it is intended to do;
- Release the data – the raw numbers – on what is happening with the NDIA’s budget. Commission independent research to understand the problems;
- Sit down with the representative bodies, engage in objectively identifying the problems and testing the solutions, and co-design the improvements that people with disabilities and their families are entitled to;
- Sack the CEO, and sack the rest of the content-free executives, who know everything about banking and insurance products, but nothing about people with disabilities or their families. Ditch the consultants. And while you’re at it, replace the NDIS board. They have betrayed our trust and lost our confidence. You need to ask – how could they get this so wrong?
The NDIA is at risk of turning people with a disability and families, who have been the Agency’s greatest supporter and most important ally, into a desperate and angry enemy. And as Katie Ball, and the history of our movement shows, it is people with a disability and their families who are on the right side of this. We will not be silenced, bullied or bought off. We will not go back.
YOU ARE HERE:
VALID Rallies Against NDIS Independent Assessments
VALID’s CEO, Kevin Stone, spoke at a rally about NDIS compulsory assessments on Saturday 22 May at the State Library of Victoria, You can read his speech below.