NDIS reform and the back on track bill
In the beginning there were the States and territories looking after people with disabilities and unobserved all was well until it wasn’t, which was when it was observed. Well, it was well but when looked upon it was frowned upon. The people were unhappy especially those with a disability and yet the coffers were alarmingly quite empty. This perplexed many as to how so much could be spent with so little reward. Had we not closed the institutions? Had we not had enough telethons? Indeed, even TipTop had sponsored some with clothing and, glorious finger buns.
Yet the overlapped and interlocking system was astonishingly inefficient, and so a new idea was born. The eagerness and excitement of the idea transcended any idea of how or what when we clearly now possessed the why. Of course, it was the right thing to do, and no one could argue, especially since it was the right thing even though we hadn’t agreed on what we were doing. It was right.
It is in no doubt the best idea in fact it was the bestest idea. However, ideas don’t float well without substance they just float away. Pretty soon ripples of discontent became Tsunamis. Like all eager gold miners many rushed to stake their claim amongst Pandemic, Inflation and global financial crisis. I mean, who could really lay the blame on anyone when everyone was indeed so signalling so virtuously well to possess the vision? Did we all not possess that same vision? Forgive me what was it again?
Some were not fortunate and were left out in the cold outside of the vision. Disabled but abandoned in such deafening silence only our hearts could hear them if the moment was right or perhaps on a 7.30 report. Children who struggled in the schools deemed superfluous and destined to such hard lives because they needed help which schools didn’t do. The elderly abandoned to stoically rot on far less than their counterparts who were less disabled but younger. It perplexed them how choice, control, and living your best life suddenly changed to 6-minute showers and God’s waiting room. Those with troubled minds are left to the torture of their thoughts with not even a hope to pull themselves out. So many were left parched with a thirst greater than ever. The thirst for survival, they sought any refuge they could. Are they to blame?
There were those made to feel guilty for how many times they opened their bowels; counting in cents made no sense. Those struggling with families to care for themselves and their sanity in a world that could only be seen as in conflict with the one we lived in. Houses so expensive we feel like the only ones not good enough to live in one. Yet so many suffer in solidarity in their insecurity unaware of how more alike they are than separate. Those who travelled far in search of survival and promises of soft fruit who found exploitation and misery in our land of sunlit plains and plenty. The cowboys made hay so much hay it rotted in their fields. Yet no great and glorious vision had manifested well not the NDIS vision. Whatever it was.
There were even those who spoke for others and stole their voices straight from their mouths who shared a different vision, their own. Yet it was somehow the same story for all concerned. The story older than us older than us all one of survival and by the only means before us taken with both hands. We blamed the government who blamed each other. So, the people blamed each other and all were right.
Only when it hit the fan, and all were thoroughly covered in it did we conclude that the shit had indeed hit the fan. So, the people all got together, and some said they hadn’t seen the shit but clearly had and others said they hadn’t seen it nearly enough. Yet we concluded that we needed to solve the problem of the vision. It had to be sustainable but for who? It had to give outcomes but what? It had to go on, but few understood exactly why and even fewer knew how. Each as passionate as the other the agreeing in disagreement eventually halted the NDIS universe and not even Tim Tams could save it.
It seems quite clear that the issue that was the issue before and still is the issue now is the question of just what the vision is. Is it affordability for the people? Well yes. Is it profitable for those who facilitate? Well, yes, it’s also necessary. Is it to meet some lofty ideal or agenda? Perhaps, but the thread interwoven is the entirely essential outcome, the grease to the wheels of all our engines, which is the human outcome. Those who need our help should be lifted beyond their care to seek out if they choose to have a life worth living.
That is the vision and the compulsion of our nature, survival, and species.
It is THE human right.
The right that transcends all others being the right to life.
We all unavoidably share our survival, suffering, humanity, and shared endurance of life, which unspoken binds us in solidarity.
This is the story of the NDIS’s search for the right question and its solution, which gives us an answer.
And no, sadly, it isn’t 42.
Even though it is as many days as possible and a few more, Bill’s back-on-track has been delayed.
So, while the fabulous government computer calculates the answer again, at least for another 42 days, we await the outcome. What is the answer? Will the NDIS survive, which is, for many, their life, their universe, and their everything?
Life, the universe and everything, and….Getting the NDIS back on track.
In the beginning…
Rather than overhaul the entire system and root out the bad players, they decided to reinvigorate with a huge purple band-aid. It’s kind of like wallpapering over dry rot. It sounded world-leading and revolutionary, and we all congratulated ourselves enormously. I mean what could be better than diverting the gaze away from failure and the States from their financial woes and eagerness to palm off disability. What could be better than rooting out all the fraud and the huge gaps in care than purple sprinkles and an emotional feel-good makeover? Let’s just give this area of the garden a little jizz, make it sound world-leading, and the old issues just go away, right?
To reinvigorate the invigorated enthusiastically and magically undertake a countrywide change management plan in a rollout. A seeping ever, ever-gorging tide of custard that eventually enveloped the nation.
We didn’t know to what extent what was done, who did what, and what it cost in part or whole. Or indeed to whom, for how much, what needed to be done, and just how much hadn’t been done before.
We decided to take all those participants’ files and make them invisible or lose them for those who became providers in the scheme. This is just as well because those entering wouldn’t have understood what they said anyway, so it nicely avoided any embarrassment. Those that did would not have tread had they known the risks they thought so better this way for them let their enthusiasm carry them. Plus, it excitingly made case management more like a game of Cluedo. That is, of course, when case management occurred.
The most extraordinary magic was those people with disabilities who had needed case management suddenly didn’t. We didn’t need anyone to know anything or be trained in anything because we now had choice and control. Which is kind of like a magical hypnotic buyer beware only the buyer demands it as their right.
If the participants were unaware of what they needed, they wouldn’t know if they weren’t getting it. It would have been better if they had known what they wanted. It was as if, by will and a tad smidge of ignorance, everyone was suddenly no longer needing care. Instead, they set out to bring in costly cleaning contractors. All that was needed was your person out of bed and cleaned thoroughly and several hundred scrolls of Facebook, and all would be well. That was until it wasn’t. Despite the repetitive reciting of codes of conduct and articles of human rights like mantras, it astonished all that these rights and outcomes didn’t transpire. Why had they not just risen and joined employment? Why had they not performed as if not disabled? Had we not repeated capacity building as an ever-positive phrase to them?
You see, nobody knew everyone knew, and someone had to know what they had to do. So many had not known, meaning nobody knew who did know to ask who knew. So, they didn’t know they didn’t know, and no one wanted to tell them. In addition, quite curiously despite fair warning that people with disabilities were in fact actually people it astonished everyone that handling large budgets or buckets of money was quite tricky. Despite this being known, it was not known or recognised, and it shocked many that this had become an issue. So many had no idea what they were doing, amongst those for whom they were doing it, who did not know how to manage, and those who didn’t know what they were working in any case.
Eventually, it became so much money that it got the attention of those in charge of the money when they went to buy some submarines and had to give an IOU. In addition, though they had decided because it had suited their budgets just how many they would be catered for at a national disability lunch, they forgot the lunch was free, and so many more would be attending. So, they didn’t have enough for those who hadn’t eaten because it offended those who always ate to have to share.
They didn’t calculate whether government money would attract so many cowboys or that not regulating services and access to said government money would attract them in such numbers. On top of the failure to calculate that people with disabilities were still people first and foremost, this had created the perfect example of a cluster fuck. Often named but rarely seen in such purity of example.
So, the government, the representatives of those with disabilities and the people and the providers decided to have a grand royal commission. After costing 600 million dollars, the results were that it was not good. So, the government of the day decided it would be only right to conduct a review separate from that of just people with a disability but just those on the NDIS. They travelled, they talked, they gave speeches, and they listened. Those who represented the people on the NDIS with a disability felt that though they had spoken, the government had heard that they hadn’t done it right, and so they did it again.
Reform, more commonly known as a do-over, would be the order of the day. This would be frequently followed by an election and often a parliamentary reshuffle.
What they had covered was that the states had misunderstood the NDIS and thought that it meant they had whisked away everyone with a disability to some place of forgetting. They had indeed forgotten that they still had some 4 million people with all kinds of needs that hadn’t been whisked away at all. Of course, this did not apply to those over 65 because everyone had indeed forgotten them. Inconveniently, they had forgotten to forget themselves.
This made society so much harder to live in for people with disabilities because they were only allowed to be disabled as far as the NDIS paid for. Yet they had not been whisked away to NDIS land and had to shop, go to school, work, access healthcare and live somewhere. Reality, it would seem, was what was forgotten. Though the NDIS was supposed to support and care for them so they could live well and in society, no one had told society or, indeed, the states.
Then, in a phenomenon similar to the tulip revolution, everyone wanted to be on this NDIS. This very much upset the calculators of these things as they had only calculated an allowed number. This was not that number. This number was incalculable.
In a total miscalculation, a fuck up of all fuck ups, they failed to design the NDIS and regulate it. Though there was much talk about human rights, which are written down, and much talk on vulnerable people and safeguarding, nobody could agree on what a disability was or what support was. They spoke so much of choice and control that they forgot that all people, and perhaps especially more vulnerable, must be set up for success and not be forced to make unsafe choices that should never have existed. Support staff were so undermined as just cleaners they had no other qualifications, which upset those who did. Again, magically, the NDIS had disappeared, everyone’s reality of a disability and the care beyond washing people evaporated. Where is the quality, where is the safeguarding and capacity building, and why have these new lives not manifested for all? Of course, it had made a difference for those who had had no care at all and for those who won the lottery and chanced good staff and were equipped with good knowledge. But this was more by luck than by design.
Some had decided they needed a diamond ring, cryptocurrency, or to shop at Kmart to live a good life. Others wallowed in bureaucracy with nothing, not even a meal on wheels to show for it all.
After much talking, it was decided that regulations needed to be written down so all could get the same and end the great lottery. It was agreed that unqualified, unregistered, uninsured, and with no security clearance perhaps wasn’t the best idea at all, after all. The people couldn’t believe they hadn’t all been registered and that we hadn’t known who they were or where they were. It seemed a little farcical to be true. Yet astonishingly, a small group of rebels, the self-managed disability advocates, objected to these changes. Despite the thousands who had contributed to talking and many millions spent on listening, they said that they hadn’t talked enough unless they could dictate to all the people their way. They couldn’t have heard if their way wasn’t the way forward, which was to do nothing at all. They being the ones with the loudest voices and the best click bait pleased the media who loved the clicks and very much liked to look official by disagreeing with the government.
So, an incredible Bill was written to fix the problem. This Bill was the first of its kind ever to enshrine all the human rights principles. Yet they still said their human rights were threatened. The taxpayer wrapped in regulations binding their lives didn’t readily understand this choice and control weapon. They didn’t have choice of working or where to live or how to live their lives. They didn’t have choice of which school or if they should pay tax. I shall say also they did not have choice in intimate pleasures however much they demanded it from Centrelink or the ATO. So, this was very hard to understand because the disability advocates demanded inclusion, and the people wondered where they wanted to be included and to which society. This one would seem far different than the one they speak of.
The NDIS costs more than the healthcare for the whole nation. IT rivals what defence costs and will soon cost more than pensions for 2.7 million people. AT a time when the cost of living is frighteningly changing the quality of everyone’s lives. AT a time when we have housing shortages and families are living in parks. When people no longer have job security. The reality is the NDIS is not sustainable. Not when it is growing at an alarming rate and still, we have people left behind in an NDIS lottery. Whilst some have bought cars, paid their rent and bills and bought diamond rings and very expensive cuddles some are lacking basic needs. It alarms me we don’t hear of this as the priority. That there is any denial of reality here is astonishing for our fellow human beings.
That the states could ponder why the ramping at hospitals is so bad when they have cut off all services for mental health and disability for everyone not on the NDIS is criminal. The contribution to domestic violence in our community consequently is undeniable. They shoved anyone they could into the NDIS bucket. Into a system that was unqualified and unprepared for the diversity of needs they were evading their responsibility for.
The lack of health equity that contributes greatly to co morbidities and cost of care in a supposed non-medicalised system. A system that denies people have health or clinical needs and then has the audacity to speak of safeguards. That has non-medical assessments to facilitate needs by non-medical professionals armed only with their pre-printed assessment sheets.
The railroading of the majority of the disability community by disability representative organisations by those who have clear conflict of interests and alliances that scream agenda. Who have spoken for and without the voices of their community. Ignoring the plight of the over 65’s. Ignoring the voices of the intellectually disabled community because they can. They can speak about us without us, and they do. The media who quote them as a whole of as “the disability community” because they can’t be bothered to listen as long as their get their headline and their click bait. Who are too afraid to be journalists and speak against someone with a disability. Who demonstrate quite loudly as do others that disability discrimination is mere lip service. Inclusion cannot ever happen if we continue to discriminate and treat people with a disability like children with children’s rules.
Its why it’s so important that any fraud and any mis spending is spoken of and not shut down. It does not affect the disability reputation. What does is the lack of support to stop it, the will to deny that someone with a disability is capable of and has done such a thing. The insistence of pleasure as a human right both alarmed and amused many housewives across the land yet fortunately they weren’t compelled quite enough or had come accustomed to the absence of pleasure they haven’t turned up at parliament house demanding theirs yet. Recent banning of intimate services led disability representatives to conclude that the government quite literally didn’t and wasn’t ever going to give a fuck.
People with disability are people first. Capable of everything any person is. Some need support to get there and some find their way in their own way as do we all. But I resent the low bar of expectations in fact I wholeheartedly reject it. However, I would like to point out that the absence of the assistance in budgeting and a robust framework did not set anyone up for success. People being people with large amounts of money need a framework and oversight. Such as it does speak of in the UNCRPD. As we are calling for this to be implemented so should this oversight be remedied. In no other sector of society would this even think of being the case. It was unfair and reckless. It is almost as if the government wanted it to blow out and fail. Thus, I blame the lack of structure and regulation for the fraud and misuse and rorting. Had the expensive computer systems functioned like anything in our modern digital age does none of it should have been possible. Surely there is blame to place and responsibility there.
The system is that complicated and so much happens that it requires interpreters, and most can be forgiven for getting the information wrong. As such it is a common theme that different stakeholders have different perceptions and understanding and disagree with one another.
At this point it is not sustainable in several areas. Firstly, from the point of view of people with disability who need more than winning a plan they need there to be substance in the plan. It’s what the plan does and its content that is important. Too many have insufficient care, improper care that affects their longevity and quality of life. Until their plans achieve a holistic outcome that is future proof, life sustaining and life enabling until people can live their lives free from the worry of their care and their NDIS the NDIS is unsustainable to them.
From a government perspective it is not sustainable economically or from the viewpoint of risk. The crime related human trafficking, drug running and gang related activity is a significant risk to society at large. From an economic viewpoint there is a red line of cost that given the fraud and given the lack of consistent outcome threatens the scheme. From an affordability standpoint we can’t afford for it to cost so much it bankrupts the country. Nor we can afford for it cost so much it affects the sustainability of other schemes such as health, education and housing as this disenfranchises and affects the human rights of everyone and is counterproductive to inclusion
From a provider standpoint the scheme is not tenable. It is not profitable. It is estimated there are anything between 150,000 and perhaps as high as 250,000 unregistered providers. I ask you how many are paying tax? There are only around 10,000 registered providers in a bastardised marketplace which is an affront to competition laws unfairly favouring those who operate without regulations and less same costs. In a healthcare setting where quality and safeguards equate to lives this is outrageous. Many providers both registered and unregistered have been holding up the NDIS and sacrificing what little profits they have. In filling the gaps in care. Gaps in plans and gaps in understanding of what a support is and often acting as pseudo guardians and providing supports way beyond their expectations. The previous system was government interwoven with large deep pockets everything was provided this is a capitalist system and those costs need to be defined, recognised and counted. They were not correctly accounted for when bringing in the NDIS
The workforce is at failure levels. The work is sporadic, hard, unsupervised with extreme risk and sometimes dangerous situations without acknowledgement or protections. Staff are often paid below award wages and employed in conditions outside of fair work practice. Being forced to breech health and safety laws in often toxic and hostile environments. The DE professionalisation of this role coupled with the increase in risk is forcing many out of the industry. This must be re-evaluated if it is to be remedied. Simply put no staff no care however fancy your policies or big your budgets. Again, the workforce is providing on average an extra 30% in unpaid for donated time to participants.
Yet astonishingly there is debate over if we need reform.
We have a bill that needs to pass and sooner rather than later. We have providers watching closely deciding if they will close their doors. Many hundreds including some big names already have closed their doors. Unfortunately, the love and the reform has yet to reach the providers and all that has transpired is more pressure. What is worse is the division between providers and participants. Well, their representative organisations. Well, some of them and most of those seem to have an overwhelmingly bias interest in self-management shutting down many other voices. Something has gone wrong here something has gone very wrong especially when we are approaching co design that we will all have to live with. The recent bombardment of Sukkars office by certain groups has distorted the view of the disability sector and sadly not all are as well informed as our current Minister Bill Shorten is on issues and they are easily manipulated, especially when it can be used as political fodder. Yet the irony is the Liberal government and let’s not forget an election is looming close may not seek to cap but is more likely to cut and co design may well be off the agenda and in the hands of those who do not understand disability. Politics is a complex game to play and such a gambit that held up the bill was a serious miscalculation in my opinion.
Whilst moral liability and social policy conflicts with financial metrics in that we get the rights we can afford identity politics and extremism which is currently a global phenomenon is holding many governments to ransom. In an age when co design is a door opened potentially now for all Australians to have a more democratic society radical system loathing identity politics serves only a few and is untenable as beyond disruption there are no solutions that are viable in the world we have today. People need good leadership but reasonable and whole nation sensitive realities will determine if that looks like walking with or doing for kind of leadership. Despite cancel culture one must be courageous enough to speak out and speak up or watch the train wreck and the lost opportunity to make history or prevent its reoccurrence. It is a brave parliamentarian who chooses in the name of democracy to walk that fine line between codesign and leadership and maintain a democracy and system that serves its purpose and all who need it. These realities have played out overseas in the UK for instance and the results have already been written and we ignore them at our peril as they no longer have a world leading system whilst we still could.
This current situation is a critical social issue and one that has no tolerance for the recent political grandstanding. This is people’s lives their very lives, and any political bollocks just serves to show us how little regard you have for us and what a silly game it all really is rather than the serious business of respecting the importance of the issue. This is bigger than anyone’s career or sound bite this is what government exists for. If it can’t come together on this, it demonstrates the weakness and futility of the system we hold dear. SO, I implore you all to share the Tim Tams and find a way together.
Like many other things such as real estate or dot com and the like the NDIS has become such a gold rush that it has become a bubble. It needs very careful and responsible handling, or the outcomes will be catastrophic. There are three possible outcomes. One the system fails, and it goes back to the states or large providers assume the role and institutionalisation wins over human rights. Second the entire financial system has to change to reflect humanity to abolish scarcity. This is unlikely for many generations yet. Lastly the system is reinvigorated and adapts a new model to suit the NDIS vision. From a linear to a circular enterprise model.
Sustainability is entirely the key here. Is it sustainable for government? Is it sustainable for the providers and is it sustainable for participants? For the last one that will depend very much on outcomes. Are participants able to live beyond their care needs and choose their lives regardless of their disability where possible.