The gap between the future of disability care and the NDIS today
With the advent of the NDIS and deinstitutionalisation, a gap has become obvious between the NDIS vision and the reality that exists for many people with a disability.
For those who do not receive the NDIS and have a disability, that gap is a chasm.
We did not consider where disabled people will live in the community. For that matter, I don’t think it was considered where any of us would be living. There aren’t enough homes, and so few are accessible—be that financially or literally.
Unlike Minister Shorten, I don’t see the NDIS as an oasis in the desert. I see it as a home pod on Mars—essential, even if it is the bare minimum because it sustains life in a hostile climate. The cost of leaving the home pod is all too high and cumbersome.
To many, deinstitutionalisation simply meant closing the buildings. It has become apparent that it is so much more than buildings. However, we continue to provide care in the community in exactly the same way we did in the institutions and expect a different result. For too many, deinstitutionalisation is just a different colour set of walls.
We don’t build communities anymore; we build dormitory towns and cookie-cutter suburbs. Community is missing, and we are paying for it dearly in our social care policies. The absence of community, neighbourhoods, and strong family and friend networks can be costed directly into our social care plans—both disability and aged care.
Many were more isolated in the community with often unsupervised and unqualified care with no access to further resources.
In addition, healthcare isn’t accessible. Disabled people don’t have access to dentistry, obstetrics, or medical imaging, for starters. Poor healthcare means poorer health and higher costs in care. The impact of poor access to health can be directly costed into plans.
Our mostly fully imported workforce has no career progression to look forward to, training that is barely fit for purpose, no job security, no supervision, and no backup.
Some are sent into homes where they know little about the person, where oftentimes mental health nurses from our own health services will not attend unless accompanied by a second nurse and police in attendance.
The deinstitutionalisation and NDIS banner provided an opportunity for states to eagerly offload responsibility for many services, including the prison system and mental health, onto an unwitting, unqualified workforce.
The reality is that the workforce to care for these people doesn’t exist. Support workers are expected to work with little training in a huge range of tasks, with an ever-increasing remit, no career progression, little support or supervision, and a high incidence of risk, abuse, and injury.
However, I will say that if capacity building were social media mastery, Australia’s NDIS participants would be excelling beyond all expectations.
The broad intersectional scope and responsibility of disability across government departments was collectively extracted and dumped into the NDIS bucket. The intersectional complexities were not understood, and the proverbial parcel was passed to the NDIS and an unwitting private sector—a parcel government had not quantified and, with limitless resources, was unable to contain.
The NDIS has indeed totally changed the lives of so many. However, I have concern that those who perhaps would have been envisioned as the quintessential participants, particularly with physical disabilities, have been left behind.
We lack the skills to provide the support, and these people still end up languishing in institutional care, nursing homes, hospitals, or so-called transitional facilities. To make hospital bed numbers look better, the disabled and elderly are pushed around and posted out of the way like an avoidant child with an unwanted piece of broccoli. It’s all about the bed numbers.
Some participants deemed too expensive end up in group homes or nursing homes with a veneer of choice and control—no privacy, no autonomy, many forced under guardianship unnecessarily, and living with people they didn’t choose.
There are many now who have noticed that the parcel passed to them is ticking.
Many people have huge plans and still remain stuck in bed with no quality of life. I can’t count the number of places where there is nearly a million dollars going into a home that is uninhabitable.
How do we make it profitable for business and tenable for government when we can’t seem to deliver a quality service at any price? Especially when we haven’t decided what a quality outcome even looks like.
There are plenty of providers fleeing the sector, stating it is not tenable, and plenty who are folding. The sector has been managed poorly, and we face the possibility of being left with a handful of private entities and no diversity or choice. After all, he who holds the gold makes the rules.
Australia has become a soft target globally. It’s easier than human trafficking and the drug trade, isn’t it? Why do you think criminal gangs have been attracted to the NDIS?
No NDIS plan, however big, can compensate for a lack of an accessible or disability-friendly community. The lack of access, lack of contemporary understanding of the human rights model, or particularly the archaic attitudes in healthcare.
To meet budgetary caps and stop escalating costs, it is entirely necessary to address the gap.
Only then will the NDIS be able to equalise just for the disability of the person and not have to compensate for the whole of society.
Otherwise, all the NDIS can—even optimistically—accomplish is the formalisation of successful privatisation of disability, which will in turn further segregate and isolate those very people.
It is more likely the government will lose public support for the NDIS, and having most providers fail, the few left will return to bulk care.
How will we provide care outcomes that are in line with human rights and the Disability Royal Commission recommendations?
Especially when applying the United Nations articles of human rights to domestic law.
The single greatest obstacle or gap that faces us is not just how to provide the best outcomes affordably, but how do we do it at any price.
I believe that “nothing about us without us” should mean entrepreneurs with disabilities as stakeholders at the table—people with disabilities being part of the solution and the evolution of new models of care. Cynically, to change the tables, those with disabilities need to be at the table. Those who hold the gold make the rules, right?
New business models and out-of-the-box thinking need to evolve to solve a very old problem—just like how new innovations and new thinking are needed to solve many of our problems. More of the same, just with sprinkles repackaged, will still get the same result—the wrong one.
Wouldn’t a more inclusive society, a society more human-rights-focused, be to the benefit of every Australian? Isn’t that an outcome we as a country should find worth fighting for? One could say we couldn’t afford not to at least aspire to it.
The issues facing disability care—such as accessible housing, healthcare, inclusive education, secure employment, and affordability of a decent life—affect all of us.
Disability rights and minding that gap now won’t just benefit people with disabilities. These issues affect the lives and futures of all Australians.
This is an intersectional governmental gap, and one that, as the cost-of-living looms over all of us, needs closing.
The question is: should cost, or human rights, determine the quality of our lives?