Standing Committee on Community Affairs

Getting the NDIS back on track

Claire-Louise McCrackan

What gives you hope?

Every one of us will have a different answer to this question.

For me hope is more about what hope enables for me in my life.

Hope is my currency.

No matter how hard life is and what adversity I must travel through the ability to have hope is what perpetuates me no matter how tough the going gets. It seems a really simple 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?

You see firstly there are the limitations of our physical ability to do something and then there is our cognitive capacity to problem solve. Then there are the conditions of our environment from the weather as a basic to more complicated things like the economy. In our country we have opportunity 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 something that is tenable, practical and a probability.

These tools change our situation and create that 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 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 great that hope is a are commodity. Some people’s lives don’t change and the only light at the end of the tunnel was if you had family to support you or the government. The NDIS was a game changer for so many people in that it was the promise of hope. The NDIS gave HOPE.

That something could equalize the circumstances for someone with a disability so they too could reach up and strive for a better life. For employment, for a family, for a home and for active status in the world.

For me I cannot imagine a life without hope to perpetuate me. For everyone regardless of their status hope is possible but for some it isn’t accessible.

That hope the NDIS gave so many has become a dream and no longer the reality.

The NDIS failed but how?

For Many Who Had Very Little Care Just Having Any At All Or A Wheelchair That Didn’T Hurt

For many who had very little care just having any at all or a wheelchair that didn’t hurt or sometimes the smallest of things did change lives. But we failed to realize the greater vision which was to equalize people so they could strive and 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 have told me who grew up in institutions that since the NDIS their level of care had greatly declined.

It would seem despite the ceremony we were unable to attain the basics and things had gone backwards. Not even the house plant model of care was consistent for everyone. Too many people were missing out on even the basics.

Whilst 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 we winged it.

In part this is a matter of legislation and regulation and in part the objectives of legislation hadn’t even been agreed upon. We did not what we were legislating for.

You see how 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 what the problem is?

It is that complicated and disability is that hard to understand that true understanding of the problem is extremely rare. Too many are enveloped in passion of their own circumstances and too many have the experience even lived experience with those limited understandings.

We can’t even agree to what co design is.

Some seem to think it is them actually turning up at Parliament house and writing the legislation. Some have affiliations with SDA or group homes or a DRO or a political party and just 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.

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Even with the expensive reviews and royal commission the results have been dismissed out of hand by some including government.

It is a very difficult and politically volatile situation to navigate. The role of government here is to govern. To decide what is the vision we are reaching for and to mark a pathway towards it. Whilst co design is honorable doing it without regulations or guidelines is as bad a decision as releasing billions of dollars and the lives into 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 intent was to dump everything disability they possibly could. The lofty ideal of choice and control and inclusion were hardly going to transcend beyond the NDIS when just about everywhere is inaccessible physically and otherwise. You can’t realize modern ideals without cooperation and no more is this more prevalent than looking at the lack of foundational supports. You can speak all you like about school integration and 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, more sustainable or take it off the states and territories because the old system was bankrupting the states or was it to modernize and facilitate inclusion and employment?

You have to understand the agenda to understand where the problem is.

You see in passing this Bill you need to understand what the agenda was which is the why. Why must it exist and what is it there to accomplish.

So, what is the Bill supposed to do?

It would seem at this point that whatever the reason why 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 then it isn’t

possible. Of course, if we can’t afford the solution then sustainability becomes the primary concern.

But I can argue well that depends on what we are trying to afford doesn’t it?

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 a contemporary Australia in such a way it is sustainable?

I guess I am being a little suggestive with the last one.

However, its relevant because when we decide what’s reasonable and necessary to provide as a disability support we have to agree on what that would be. What we determine is reasonable and necessary is entirely based on what goals we are trying to achieve. Are we just going to give or facilitate an ideal life?

Or do we equalize to facilitate a life?

To give each Australian an ideal life is actually quite impossible. Even if money were no object. Because the space in 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 government?

Or are they 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 this is something that even those who pray they have this kind of joy can’t be guaranteed that even God could provide. This is certainly something that is extremely subjective. For instance,

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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. So where do we draw the line you ask? I think it comes down to where specifically does government draw the line. For instance, 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 to 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 by virtue of living in Australia to live by. The rules are the same for everyone bar children and those who do not possess capacity. However of course even then depending on the rule broken the rules apply to all equally before the law.

To me equality before the law equates to equal outcomes and equal opportunity. As a facilitator of the framework we live by this is what you must consider 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 ones owns choosing?

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 choose what we like or don’t like or enjoy is a matter of personal choice. One would even argue that no one would want for government to ever possess quite 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 will of course be the choice of the individual. 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 another.

Again, it is subjective.

However, to equalize 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 I suppose.
Others will be able to achieve things that even the very luckiest and best of any society could only dream of. What the government must do is enable to the best of their ability that opportunity.
There will be those who are 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 equalize those lives.
Some will be so profoundly disabled their joy in life is smaller like music or the friendship of another human being.
But all must be safe and cared for and able to live beyond the worries and burden of their day to day care to live as full as life as possible for them.
Whilst there will be others who will absolutely fly and others no matter what you do they 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 own outcome.
That benchmark and minimum outcome as a standard should be free from harm. Care that is quality and consistent that frees people enough to strive if they can and if they choose to and if they can have the chance to have some hope to realize even the smallest of dreams.
That is living. That is living beyond a basic survival to thriving as more than citizen by birth but as an active and included member of society.

So, what about the damn Bill Claire?

Everyone has a different idea of what is wrong with the NDIS.

Which is why I have focused on what the outcome and the goals of the NDIS need to be.

Governments are facilitators and regulators and this is what the government must do now.

Regardless of the literally thousands of different answers you will get as to what is wrong there is only one answer or pathway to ensure standardization of outcomes for everyone.

From there it is up to each individual to choose their life.

If each participant can live free from the burdens and fears of their daily care they can look beyond this to a life beyond care.

There must be quality and consistency in care. equality and consistency in plans standardization of what is a support Regulation of providers so everyone chooses from an equal platform Fairness in who is eligible to receive the NDIS Assessments that are concise so we know what exactly is needed to equalize A concise understanding of what is and is not the role of government and the NDIS Pathways and foundational supports that assist anyone to be included and interact with education, business, health and employment, entrepreneurial endeavors, family and community.

Fairness for tax payer that monies are spent responsibly with the outcomes agreed No fraud or rorting of the system facilitated by legislation rather than the enabling of it due to lack of legislation But most of all it has to be sustainable for future Australians to rely upon

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Beyond not having a clear understanding of what is governments role in life there was no clear goal for what the NDIS is and is not. Because the NDIS did not work the same or as well as it should it was unable to facilitate a life or even the hope for a life beyond managing one’s care.

It has become the obsession of many. Life should be lived beyond care. Care and capacity building and the facilitation of a life beyond it should be what the NDIS aims for. Currently we have an absolute mess and amongst that chaos the majority are receiving less and less quality for more and more cost.

Regardless of what the government says or is demanded by people with a disability the workforce and the providers of this care have largely been ignored as an inconvenience. Providers are leaving and the workforce is dwindling. It should not be ignored that the workforce is unhappy and they should be heard. If there are only a few providers left then they will dictate what care is given and what goals they aspire to. The market must be diverse and vibrant and it can’t be ignored how many people with disabilities are also providers.

Coming ahead is a huge storm and if the government cannot agree on what it is doing and why then regardless of any Bill the NDIS won’t make it through the storm.

There is no place as I have said before for political grand standing. This is an extremely serious issue which can easily leak into other sectors into catastrophe.

The government must be decisive and united and very clear going forward. It must not leave itself open to subjective interpretation as it has done before.

The way that government has always done this has been through legislation.

This Bill enables the wheels of change to begin. Providers and workforce and participants are all holding their breath waiting for this Bill. No co design no change can occur without its passing.

In moving forward thereafter I ask you to consider the clarity we lacked before and the pain this has caused. In calling it the wild west its appropriate to remember the west was wild because of lack of the rule of law, the lack of regulation and competing agendas.

We can all name a different reason as to why the NDIS failed first time around but there is absolutely no doubt that the lack of regulation had a great deal to do with it.

If people can’t be cared for adequately if we can’t enable those that can to work in whatever way towards a better life then we leave them with the only avenue for them is to demand it from the NDIS.

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 the possibilities that it gives.

This is also why there must be the one registration system for providers and a national registration system for participants.

If you have a separate system for self-managed then everyone will flock to that system. Then all of the work that has been done will be a futile exercise and the inevitable will become even harder. Which is registration of all providers. There is no sector of society that is entitled to a different set of rules of entitlements and I feel this would be grossly unfair.

If the Bill is not passed inevitably some Bill will have to be in the future. All of the monies spent and data gathered will have been a futile effort only to come to this same impasse.

What will the cost of that be and how many lives will we have to lose?

Identity politics, toxicity and vulnerability

One of the critical things that were 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 have to be within what everyone else in society has the option of making.

To avoid having to capacity test every participant it is essential that there are guiderails for what choice and control what it is and is not. It does not give any person the right to demand anything that is illegal, endangers another or removes another’s choice and control.

There is significant issue within the workforce within the self-managed sector especially. Paying below SCHADS, unreasonable demands outside of scope or job role and unreasonable hours.

This must be addressed.

This is an extremely contentious issue when it comes to 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 choice of many by listening to the demands of choice by a few.

When we deinstitutionalized we didn’t prepare society and we certainly didn’t prepare people,

Care and frameworks for institutionalization still existed. In short, we didn’t deinstitutionalize the people. In an institution where temperature is controlled and everything is controlled by others it is entirely different to community. Community demands a mutual obligation of the law and equality. We don’t afford it to one by removing it from another. Quite often I see 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 entitlement, human rights aren’t about affording privilege or exemptions for one’s actions. In treating people with a disability as children with children’s rules it breeds an entitlement which has prevented solid and robust discussion. In our cancel culture no one wants to be the asshole.

I believe it is however counterproductive to inclusion and has created an atmosphere where open discussion has become difficult. Investigating rorting is seen almost as cruel rather than 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.

Whilst it’s all well and good to say nothing about us without us I would say nothing about us without all of us.

Conflict of interest and agendas are as applicable in this sector as they are 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 organizations 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 organizations that build SDA housing for example, or sit on multiple committees and councils and boards and are anything but independent.

In safeguarding it is important to ensure that all of those who face people with a disability interact with and speak for aren’t perpetuating their own agendas.

The demonization of providers has been very public and counterproductive to goodwill.

The poor treatment of and lack of understanding of what the workforce does beyond their own personal care has greatly affected the industry.

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 disable others further. It too needs regulating.

Please remember that the majority of people with a disability are just that people who happen to have a disability. They can be good they can be bad and 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 just want to get on with it. They need change and they need consistency. Just 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 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 support worker who is competent? 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 right information?

Interestingly id 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 that are consistent for their life’s duration and not each plan separate to another placing peoples lives in utter turmoil. It’s like applying for a mortgage every year. It is incredibly stressful.

Certainly, the NDIA quite frankly needs to get its together

Ultimately because of the reality of its lack of economic sustainability we will inevitably be right back here eventually. 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 hell of 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 full lives whilst others will be able to make their hopes their reality.

For all Australians a more sustainable NDIS is an obvious benefit and necessity. However an NDIS that does more than the bare minimum in sustaining life adequately (which it struggles to do even now) but lifts as many as it can to full participation in the community is a benefit that cant be measured.

It is my hope we can achieve that outcome. Beyond sustainability and into viability.

Because at this time the NDIS is neither.