This camping aid allows a woman to stand and pee like a man. It is also used more frequently than you’d imagine by disability support workers, so their low-life butts don’t touch their employer participants’ toilet seats. Curiously, when I look up the Fair Work policy, I see no support for such a device. Nor are there recommendations in the United Nations Articles of Human Rights that equality is ever obtained by afflicting a loss of humanity and dignity to another. Can you imagine getting a number two down this? Or using it when menstruating or during a period? Or how about a pregnant staff member?
This sector is experiencing workforce failure, and there don’t seem to be enough people willing to work in this sector. I shall say that staff shortages, poor quality care outcomes, and unqualified staff are not phenomena that occur just in Australia. Nor is the paradox of massive social care expenditure with ironically obverse results in poor outcomes. Equalising outcomes rather than equalising opportunity results in massive ineffective expenditure with catastrophic results.
Just like ambulance ramping, an ageing population, a cost of living, and a frankly terrifying housing crisis, identity politics and its extremism are also infecting the global social care spectrum. It would seem that across the world—in political arenas, academia, and all of its surrounding tentacled offshoots—the fallacy of composition is greatly afflicting policy and thwarting the very thing it says it stands for: equality, inclusion, and progress for all.
To explain the fallacy of composition, think of a group of stakeholders standing blindfolded, each at their section of an elephant’s body (representing society and, in this case, the NDIS as an issue); they each emphatically describe what stands before them and as a total part. Yet each party has only a part of the answer; none without communicating with the other can correctly define the proverbial elephant in the room, which is the issue at hand.
This is the weakness of bureaucracy and the nature of the fallacy of composition. Echo chambers in a social media algorithm world create new elites akin to the administrative ivory towers of the old. Those echo chambers, partnered with extreme idealism, contribute to the fallacy of composition. Extremist idealism is bred in social media and groupthink echo chambers. None see the whole elephant, which is generally us, the people, and in this case, its disability support staff. Contributing to the fallacy of composition is the endemic lack of common sense currently infecting all corners of the modern world.
Hello, I am Claire—Louise McCrackan. Thank you for joining me on the Butterfly Effect. Here, we discuss human rights, disability, aging, reforming social care, the NDIS, economic reform, and the possibility of a better, more fulfilled life for everyone. If you are interested in these topics in this vastly changing world, welcome and please like and subscribe to remain a part of the butterfly community. This community is a safe place for everyone, be it a support worker, participant, family carer, parent, coordinator, or staff member in the NDIS and NDIA system. Let’s work together to be genuinely compassionate and supportive of each other. Remember, we create and are responsible for this world we live in. As Rumi said, “When I was young, I wanted to change the world, and now I am old and wise, I want to change myself.”
So, let’s get on and get to it.
The NDIS was the answer to disability care in Australia, but beyond that, it was the pathway to inclusion, better care, and a fulfilled life. The reality is it was far from it. It had become an unregulated and out-of-control financial freight train on a path to derail Commonwealth budgets and its vulnerable passengers. It seemed paradoxical that at no price could we get the outcomes in people’s lives the NDIS was intended for. Fraud, incompetency, confusion, and almost deliberate acts of administrative inconsistency became systemic realities. Vested interests, personal agendas, crime, greed, entitlement, stunning conflicts of interest, and self-interest have hindered progress. Reform and getting the NDIS back on track has been thrust at us with no criminations of the chaotic system that bred, controlled, and administered the NDIS cluster fuck.
The NDIA has been almost quarantined and thickly coated with a sticky coat of impenetrable impunity. It would seem exempt from reform, just as the designers and collaborators responsible for the mess are.
Choice and control often ironically conflict with common sense, good practice, and, most importantly, safeguarding. Ironically, inclusion and choice don’t include accountability or account for the ability or capacity to make choices. Risk, responsibility, and consequences are placed on providers with ever-increasing volume in a sector that flies in the face of reality and an extreme misalignment of the risk-averse insurance sector. I doubt that insurance companies would relish and advise providers to breed such incompetence and then insure them. You cannot dress negligence as choice and control. You cannot have liability without accountability, and competence is always a nemesis of negligence.
I ask the question: how can you live this supposed best life if you are riddled with pressure sores, are slowly dying, aspirate every swallow, and spend your days staring at a wall on your own with no one around who even knows what aspiration is? How long will this fulfilled life be if there aren’t enough staff, or if, through incompetence, you are slowly dying because of a thousand failures and oversights in care and best practices?
Yet despite the 600-million-dollar Royal Commission and the plethora of reports, reviews, and consultations, we continue to fly totally in the face of common sense. Some think registration, regulation, training, and supporting those who support us are not the answer. Like the aged care industry, the quality of the everyday staff and the support of the support workers is overlooked. It’s even been demanded as a right.
No other sector or part of the community would ever be tolerated to require and be funded outside of practice standards and prescribed against professional indicators. Especially in a risk-based sector where safeguarding is meant to be such a priority. Consider how many OTs, for instance, prescribe not what is indicated professionally but what has been chosen. Indeed, choosing from within safe boundaries should be the only pathway. The consequences include posture, pain, swallowing, respiration, mobility, infection risk, and other health and longevity issues.
I ask you: how can the NDIA be so concerned and driven by safeguarding when the death of a participant is merely an opportunity to stop funding? The only stipulation is that it should be reported within 24 hours. You can’t have a second more on the meter once that last breath has expired. You’d think it would be an opportunity to ensure the participant passed without negligence. You’d think compliance would demand clarification of cause of death at the very least. Stunning, glaring oversight—or is this the very representation of incompetency, or perhaps the revelation of why safeguarding has been such an oversight? Intent or conflicting agendas, you be the judge.
Disability support workers are the overlooked key factor to quality and safeguarding. They are undervalued, exploited, forced to work in unacceptable conditions, and deprofessionalised with no career progression, fit-for-purpose qualifications, or adequate support. It is a hugely significant factor—the essential key to the success of the NDIS system and the long-standing elephant in the room. Their burnout, poor qualifications, and lack of support lead to shortened lifespans, reduced quality of life, higher care costs, higher health care costs, and the development of unnecessary co-morbidities on a massive yet unacknowledged scale amongst participants and support staff.
The failure to address this issue has caused the death of a thousand cuts or failure in care frameworks we ignore at our peril. In the current status quo, we cannot address this issue just by imposing harsh penalties, no matter how vigorously enforced, and expect ever to achieve quality or safety.
When we read horror stories about individuals with disabilities experiencing physical abuse or severe neglect, the cause-and-effect relationship leading to death is often all too evident. However, what is less understood but far more common is the phenomenon of “death by a thousand cuts”—a series of failures that result in shortened lives, unnecessary co-morbidities, and immense suffering for many participants. These deaths are primarily caused by long-term inadequate care.
Over time, like the proverbial frog that is slowly boiled, those at risk are being harmed without even realising it.
The quality of care provided by the disability workforce is the most critical issue that needs immediate reform; it should be our top priority.
However, we have become distracted by the “fallacy of conformity.” We have strayed from the urgent issue at hand; we are now threatening the viability of the provider market and, most importantly, still failing to address the crucial aspects of safeguarding and quality within the NDIS.
Enter quality and safeguards and Bill number two, which needs to do more to improve quality or safeguarding. They believe that deterrents will enhance quality and safeguarding. It’s akin to placing a Bunsen burner against our already simmering frogs.
Many providers and staff are leaving the sector, and sadly, it’s not only the cowboys who are being run out of town. Safeguards should also safeguard the industry.
I will assume they believe that regulation, which is hotly debated, is unnecessary if there are high enough costs to deter abuse—a Trojan horse to facilitate self-management. They oppose regulation and qualifications for staff.
The NDIS has indeed been likened to a lifeboat in the middle of the ocean, but let’s be aware: sharks from all quarters are in the sea, and it’s far from being just the providers.
We have a hospital-based system, not a health system. Health equality is far from reality. In this country, if you are in a wheelchair, I challenge you to find where you can have a pap smear or a mammogram or attend a dentist that will accommodate you.
There is bugger all housing and very little of it—more than insecure timesharesque nonsense or convoluted investment ponzis.
Support staff need career progression and qualifications. How would large insurance claims likely ever be paid out in such a cavalier environment? Especially with such large sums of money. Does the government need to understand their liability in this massive oversight? To have such penalties, extensive risk management scrutiny will have to occur, which in the current status quo is a proposition that will result in a profound loss of choice and control because providers will be forced to control the environment, which is counterproductive to safeguarding choice and control and choice of provider.
There are massive gaps in understanding by stakeholders, which hugely affect people with disability’s effective integration into the community. So, organisations sprung up with a parallel universe of support for everyday things. I thought it was about societal integration, not creating a parallel society, and it was extremely costly and prevented access even further. For example, instead of requesting that hairdressing salons become more accessible, funding support for special home support hairdressers was demanded.
We need a competent, qualified workforce across the board. We also need to address issues, I’m sad to say, like modern slavery and illegal conditions for staff.
We cannot ignore the considerable number who are assaulted and leave due to psychological injury—more than every other sector put together. Can you imagine what that costs? Some 85% have endured violence in the workplace.
A burnt-out, disgruntled, resentful, and unqualified workforce is dangerous. Safety and safeguarding cannot ignore this reality.
No fine, however hefty, repaired a life.
Many providers and their staff have made tremendous sacrifices to support their participants. Many support staff work an additional 30% of unpaid time—that is despite unsafe rosters being allocated due to a lack of funding for anything else. There needs to be a clear definition of the role as it is today. It’s unacceptable not to be able to use the right number of staff to comply with occupational health and safety standards and insufficient clinical focus to keep people safe and well.
For instance, many people with disabilities, especially those in wheelchairs, wouldn’t be aware of their weight. For all the talk of assessments, wouldn’t it be prudent for occupational health and safety and assessing staff numbers to reference the weight-to-staff ratio required? Isn’t it better not to permanently damage people’s joints or risk dropping someone? Isn’t it better that we have fewer staff injured?
Do we wish to create a substantial risk-averse sector and many more bed blocks in our hospitals? Where do you think these participants will go when providers leave the industry? Unless, of course, the big guys are already lined up for a windfall. A monopolised market won’t help choice and control folks. There are rumours there’s funding set aside to bail out the right providers. Wouldn’t business and social continuity be best served by safeguarding providers? Many fabulous providers have dedicated their lives to this but are being trampled because they did the right thing in an untenable space.
We dismiss these issues while providers struggle to subsidise funding gaps in care, pretending the gaps are all funding, not service needs based. The government can kiss goodbye to any budgetary savings if providers and their staff decide to be less charitable and charge for everything they must provide to appease the moral liability gap and the gap in the line-item description and what staff are expected to do. Support staff have reported an average of 30% uncharged time that pales against the furore of reform for the measly hard-fought 8% savings. You know how you get plans, right? Competence and conformity of process. Ensuring all providers are on the same track is how you get it back on track. End the chaos and confusion and the overcomplications. You end the wild variations and potluck results in the lucky dip review and assessments if there is conformity from the NDIS and the providers.
The human service profession needs to be overhauled—from childcare to child protection to aged care, disability, and auxiliary care. It needs to be professionalised and registered, just as nurses are. We are underutilising our workforce and missing an opportunity. We could use support staff in our hospitals for auxiliary work, and they can lessen the cost burden.
Handover procedures and sharing critical information that can place the participant and staff at risk should be provided. No more young, untrained women attending men on forensic orders. No more dumping people with mental illness in the community with support that is less qualified than cleaners. No more behaviour management in place of understanding the underlying condition because we have no idea what the condition is. No more over-medicating people because staff have no idea what they are giving them beyond an opiate addiction. No more shortening lives with aspiration pneumonia because the staff have no idea what it is.
There will be no more creating multiple diverse roles, creating ten people to change a lightbulb that nobody knows where it is scenario to compensate for the fact that support staff can’t organise and manage capacity building or life skills and the complete lack of care coordination. No more dumping people in hospitals because the majority of staff can do little more than clean and don’t know how to look after someone with complexity or high-intensity needs. No more flooding the mental health triage lines with a majority of NDIS calls from unsupported, untrained support staff over their head with complex participants and no supervisory, professional support.
Enough.
All government departments, including health departments, interacting with people with disabilities must reflect the NDIS vision. There can be no more returning to the dark age mentality outside of NDIS space. If the NDIS is to function, safeguards must enforce that vision across all government sectors and the entire community.
I am sick and tired of hospitalisation being the single most dangerous thing aside from unqualified support staff that can be inflicted on a participant.
There can only be choice and control with a competent, capable, and supported workforce; now, it’s an illusion. A skilled support worker changes lives, not policy. It provides the opportunity and reality for choice, control, and independence to exist. How far can anyone get if the staff don’t know how to use a wheelchair, can’t cook, can’t help with medication, don’t know about sanitation control, and don’t have the will or the passion to value the experience and explore the world with a participant?
The way to change culture and outcomes is through the workforce—the quality of staff, which safeguards participants’ choice and control.
Right now, the workforce is not at the centre of the discussion.
But we are all in the centre of the pot, and I’m coming to the boil.
Well, that’s me for today. I encourage you to contribute to the discussion, and I always reply to as many people as I can. If you’d like to contact me, please do so on 1800 422 228 or email at claire@carersandadvocates.com. I am also on Facebook @carersandadvocates and Instagram @carersandadvocates, or you can check out our website at www.carersandadvocates.com. You can also find me on LinkedIn.
Please like and subscribe now to contribute and remain a part of the butterfly community. As small as our effects in this world are, we can affect change from small things, which begins with each of us. It also enables and lifts others to do the same. Thank you for listening. I genuinely appreciate your support.