What gives you hope?
Every one of us will have a different answer to this question.
For me, hope is more about what enables me in my life.
Hope is my currency.
No matter how hard life is and what adversity I must endure, the ability to have hope is perpetuated. It seems a straightforward thing, but for someone with a disability, it is a huge thing. Will tomorrow be a better day, or will it always be like today?
First, there are limitations to our physical ability to do something and our cognitive capacity to solve problems. Then there are the conditions of our environment, from the weather as basic to more complicated things like the economy. In our country, we have opportunities that others can only dream of. Opportunity affords us the chance to educate ourselves, to strive, and to give life a go. Beyond just dreaming, hope is tenable, practical, and probable.
These tools change our situation and create hope for a better life—one that has every chance of becoming a reality. For people with a disability who may not have the mental or physical capacity or the ability to study or work, the world becomes smaller. I have always looked at hope as balloons in the air, and I’m holding them, and each one represents a chance of a bit of hope—to have an experience, to get a better job, build that dream home, or change my life completely.
For many people with a disability—with physical limitations, cognitive limitations, an inaccessible world, discrimination, and poverty—the challenges are so significant that hope is a rare commodity. Some people’s lives don’t change; the only light at the end of the tunnel is if you have a family to support you or the government. The NDIS was a game changer for so many people because it was the promise of hope. The NDIS gave HOPE.
That something could equalise the circumstances for someone with a disability so they, too, could reach up and strive for a better life—for employment, a family, a home, and active status in the world.
I cannot imagine a life without hope to perpetuate me. Hope is possible for everyone, regardless of their stature, but for so many, it isn’t accessible.
That hope the NDIS gave so many has become a dream and is no longer a reality.
The NDIS failed, but how?
For many who had very little care, just having any at all, a wheelchair that didn’t hurt, or sometimes the smallest of things, did change lives. But we failed to realise the greater vision: to equalise people so they could strive, work, and be included in society. It wasn’t just to look after people because the institutions had managed to do that.
We wanted more.
Many people who grew up in institutions have told me that their level of care has dramatically declined since the NDIS.
Despite the ceremony, we could not attain the basics, and things had gone backwards. Not even the houseplant model of care was consistent for everyone. Too many people were missing out on even the basics.
While way too many people had trimmings that a great deal of mainstream society could not even hope for.
We failed to have our ducks in a row and winged it.
In part, this is a matter of legislation and regulation, and the objectives of legislation hadn’t even been agreed upon. We did not know what we were legislating for.
Can you answer a question when you don’t know what it is? How can you solve a problem when you don’t know or can’t agree on what the problem is?
It is that complicated, and disability is so hard to understand that a proper understanding of the problem is scarce. Many are passionate about their circumstances, and too many have experience, even lived experience, with those limited understandings.
We can’t even agree on what co-design is.
Some seem to think it is them turning up at Parliament House and writing the legislation. Others have affiliations with SDA group homes, a DRO, or a political party and parrot their views.
What it has resulted in has been misinformation and confusion on mass.
As I have said in my podcast, we didn’t know what we didn’t know, and those who didn’t know didn’t know they didn’t know it.
Even with the expensive reviews and royal commission, some, including the government, have dismissed the results.
It is a challenging and politically volatile situation to navigate. The role of government here is to govern. To decide what vision we are reaching for and to mark a pathway towards it. Whilst co-design is honourable, doing it without regulations or guidelines is as bad a decision as releasing billions of dollars. It lives in the care of anyone with an ABN. The lack of regulation was just an astounding oversight. In no other sector of society would we even consider not regulating where safeguarding was a consideration?
The states and territories intended to dump everything that they possibly could. The lofty ideal of choice, control, and inclusion hardly transcends beyond the NDIS when just about everywhere is physically and otherwise inaccessible. You can’t realise modern ideals without cooperation, and this is no longer more prevalent than looking at the lack of foundational support. You can speak all you like about school integration, health equity and employment for all, but in a hostile environment, there is no hope of that occurring. You must have the states and territories on board.
One only has to attend a hospital and be confronted by the antiquated attitudes for that rude awakening.
We didn’t all understand the problem equally.
Only the NDIS shared the vision, and they weren’t even sure what that was.
The states and territories are still decades behind in understanding.
So, was the objective of the NDIS to get rid of disability, make it more affordable and sustainable or take it off the states and territories because the old system was bankrupting the states or was it to modernise and facilitate inclusion and employment?
You must understand the agenda to know where the problem is.
You see, in passing this Bill, you need to understand the agenda, which is the why. Why must it exist, and what is it there to accomplish?
So, what is the Bill supposed to do?
At this point, whatever the reason is, the HOW is the primary consideration.
You see, it doesn’t matter what lofty ideals we have or don’t have; if it isn’t possible, it isn’t feasible. Of course, if we can’t afford the solution, sustainability becomes the primary concern.
But I can argue that it depends on what we are trying to afford.
Are we trying to build independent homes for everyone with a disability?
Are we trying to alleviate the states and territories from cost?
Are we trying to fix the mess there was before?
Are we trying to incorporate the UNCRPD?
Are we trying to ensure no one with a disability suffers neglect?
Or are we trying to solve the social care dilemma in such a way that it is palatable to contemporary Australia in such a way it is sustainable?
I guess I am being a little suggestive with the last one.
However, it’s relevant because when we decide what’s reasonable and necessary to provide disability support, we must agree on what that would be. What we determine is reasonable and necessary is entirely based on our goals. Are we just going to give or facilitate an ideal life?
Or do we equalise to facilitate a life?
To give each Australian an ideal life is quite impossible, even if money were no object.
Because the space between the UNCRPD articles is incredibly subjective.
Let’s take, for instance, this sex argument. Is pleasure indeed a human right?
Are all human rights the responsibility of the government?
Or is this only the case when someone has no other avenue or hope?
How do we define pleasure? How do we KPI that? Where do we complain to get it? (asking for a friend)
For me, even those who pray they have this kind of joy can’t be guaranteed that God will provide it. This is undoubtedly an extreme instance where you can give out the resources and the money to assist and provide the services, but it cannot be guaranteed.
Just as education won’t guarantee a job, where do we draw the line, you ask? I think it comes down to where the government specifically draws the line. For instance, the government can draw the line with legislation that everyone has the right to religion. It doesn’t mean everyone has to have a religion, and it certainly doesn’t instantly result in existentialist nirvana for all who choose to have one. The government cannot legislate that God will never disappoint.
The government is merely the facilitator here.
It governs and creates the parameters we choose to live within because we live in Australia. The rules are the same for everyone except children and those who do not possess capacity. Of course, depending on the rule broken, the rules apply to all equally before the law.
To me, equality before the law equates to equal rights and opportunities. As a facilitator of our framework, you must consider this with this Bill.
Does it enable the opportunity for equality as much as is reasonably possible?
Does it provide hope beyond one’s adversities to live a life of one’s own?
Isn’t hope as equally subjective as pleasure?
Yes, it is, and yet it isn’t. The government can provide and facilitate the means to a good life.
The rest is always up to us. What we like or don’t like or enjoy is personal choice. One would even argue that no one would ever want the government to possess that much power.
For some people, a good life will be more hands-on and resource-based than others. If it’s a good life, it will be the individual’s choice. They may choose to become addicted to drugs or alcohol or to end their life completely. But they had the opportunity to choose to do their best and their choices, along with a fair amount of luck, to dictate the outcome. That outcome may be an ideal life for some and a poor life for others.
Again, it is subjective.
However, to equalise the platform that each of us works from is something that the NDIS can do.
That is for those who require the NDIS to live a fulfilled life.
For some, that will be a simple life with their family or alone or with access to the young and the restless every afternoon. Each to their own.
Others will be able to achieve things that even the luckiest and best of any society could only dream of. The government must enable that opportunity to the best of its ability.
There will be those unhappy with ten castles because they wanted eleven. There will be those happiest living under a tree. What needs to happen here is an agreed standard or benchmark of what is reasonable and necessary to equalise those lives.
Some will be so profoundly disabled that their joy in life is smaller, like music or the friendship of another human being.
But all must be safe, cared for, and able to live beyond the worries and burdens of their day-to-day care to live as full a life as possible.
There will be others who will fly and others who, no matter what you do, will never be happy even if you gave them a gold-plated chair and hookers on the hour every hour.
The objective here is to ignore the subjective information and legislate so that everyone on the NDIS has the same opportunity to facilitate their outcome.
That benchmark and minimum outcome as a standard should be free from harm. Quality and consistent care for people enough to strive if they can and if they choose to and if they can have the chance to have some hope to realise even the smallest of dreams.
That is living. That is living beyond basic survival to thriving as more than a citizen by birth but as an active and included member of society.
The failure of the NDIS ironically increased its burden upon it.
When the care and the plans are standardized, outcomes in quality of care will be equal—equality across Australia for access to the NDIS and all its possibilities.
This is also why the one registration system for providers and a national registration system for participants must exist.
If you have a separate self-management system, everyone will flock to that system. Then, all the work that has been done will be futile, and the inevitable will become even harder: registration of all providers. No sector of society is entitled to a different set of entitlement rules, and I feel this would be grossly unfair.
If the Bill is not passed, some Bill will inevitably have to be in the future. All the money spent, and data gathered will have been a futile effort, only to come to this same impasse.
What will that cost, and how many lives will we lose?
Identity politics, toxicity and vulnerability
One critical aspect that was also not defined was choice and control. This has created a serious point of contention between providers and participants. Sometimes, it’s the understanding that the choices must be within what everyone else in society has the option of making.
To avoid having to capacity test every participant, there must be guidelines for what choice and control is and is not. It does not give any person the right to demand anything illegal, endanger another or remove another’s choice and control.
Significant issues exist within the workforce, especially in the self-managed sector: paying below SCHADS, unreasonable demands outside of the scope or job role, and unreasonable hours.
This must be addressed.
This is a highly contentious issue regarding group homes and education. Many people within the intellectual disability sphere feel that group homes provide family. That sheltered workshops provide purpose and belonging. Many feel that segregated education is more fitting or preferable for some individuals. Be careful not to remove the choice of many by listening to the demands of choice of a few.
When we deinstitutionalised, we didn’t prepare society, and we certainly didn’t prepare people, but care and frameworks for institutionalisation still existed. In short, we didn’t deinstitutionalise the people. In an institution where the temperature is controlled and others control everything, it is entirely different to the community. Community demands a mutual obligation of the law and equality. We can’t afford it to one by removing it from another. Quite often, I see the placation of people with a disability whereby there is a lack of honesty. Just because someone has a disability, the lack of honesty has misdirected dialogue. Human rights are not an entitlement; they aren’t about affording privilege or exemptions for one’s actions. Treating people with a disability as children with children’s rules breeds an entitlement that has prevented solid and robust discussion. In our cancel culture, no one wants to be the asshole.
It is counterproductive to inclusion and has created an atmosphere where open discussion has become difficult. Investigating rorting is seen almost as cruel, as opposed to the trappings of being a citizen and the consequences thereof.
The scheme must be suitable for all and work for the worst affected on their worst day.
While it’s all good to say nothing about us without us, I would say nothing about us without all of us.
Conflicts of interest and agendas are as applicable in this sector as in any other. There has evolved a toxicity in the culture. You can be a parent of a disabled child and shouted down for speaking about your struggles. You can be cancelled for having a differing opinion. There are DRO organisations who say they are independent but are just government-funded lobby groups with multiple conflicts of interest and agendas who pseudo-consult to the burgeoning and greedy disability housing sector.
Who no longer represent disability but the interests predominantly of self-managed participants with agendas. Affiliations with organisations that build SDA housing, for example, or sit on multiple committees and councils and boards and are anything but independent.
In safeguarding, it is essential to ensure that all of those who face people with a disability and interact with and speak for aren’t perpetuating their own agendas.
The demonisation of providers has been very public and counterproductive to goodwill.
The industry has greatly been affected by the workforce’s poor treatment and lack of understanding of what they do beyond their own personal care.
The bullying openly on social media platforms by the same themes on mass of people with a disability has disenfranchised many and isolated them from their community.
How you move forward from here, I ask you to understand that this can be a very toxic, very hurtful space to operate in. Old trauma, agendas and those who are more able often can turn off others further. It, too, needs regulating.
Please remember that many people with a disability are just that, people who happen to have a disability. They can be good, they can be bad, and they are just like the rest of us. It is our discrimination that chooses to see them differently.
There are so many families and participants that want to get on with it. They need change, and they need consistency. What is an assessment, what is required, will my plan be the same as someone else’s just like me? Will I be safe? Will I have a choice if I wish to live with others as many in the community do? Will someone help me if I don’t understand? Will I be able to have a competent support worker? What does a support worker do? What will the NDIS do for me? What can I spend money on, and who can I trust not to use me for their own gain and to give me the correct information?
Interestingly I’d like to point out that those banging on about institutionalization were never actually in one. Those people are voiceless and don’t receive the red carpet from the media to hear their less sensational story or narrative. Which is quite simply when will this change happen? Because they are sick and tired of not knowing who to turn to, where to get accurate information when even their own have used them.
People want to see plans consistent for their life’s duration and not each plan separate from another, placing people’s lives in utter turmoil. It’s like applying for a mortgage every year. It is incredibly stressful.
Indeed, the NDIA quite frankly needs to get its together
Ultimately, we will eventually be back here because of its lack of economic sustainability. That is your choice and in your control.
The NDIS has been a game changer and can continue to be if we can keep things moving forward with sensibility and sustainability.
The NDIS wishes to place those most affected back at its core.
These people have largely been left out and stuck in hospitals or nursing homes or their lives cut short by incompetent care.
There is a lot of work to do and no time to lose.
With your help, it can become the hope to many it once was as it was envisaged to be at its creation.
Some will live safer, more comfortable, and fuller lives, while others will be able to make their hopes a reality.
For all Australians, a more sustainable NDIS is an obvious benefit and necessity. However, an NDIS that does more than the bare minimum to sustain life adequately (which it struggles to do even now) and lifts as many as it can to full participation in the community is a benefit that can’t be measured.
It is my hope we can achieve that outcome beyond sustainability and into viability.
Because currently, the NDIS is neither.
Claire-Louise McCrackan