Senate Report

So you want to now about the NDIS?

Carers and Advocates Australia Pty Ltd 12/12/2023

THE SENATE REPORT

So you want to know about the NDIS?

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Table of Contents

SNAPSHOT OF ISSUES ……………………………………………………………………………………. 4

THE LOW DOWN AND THE VISION ………………………………………………………………………. 5

DEINSTITUTIONALISATION, IDEOLOGY AND REALITY …………………………………………………… 8

NEED FOR COMMUNITY STRENGTHENING ………………………………………………………………. 9

THE WORKFORCE………………………………………………………………………………………… 9

disability employment from support work to disability enterprise. …………………………. 12

CHILD PROTECTION AND FAMILIES WITH DISABILITIES ……………………………………………….. 13

CONVOLUTED INCOMPETENCE AND COMPLEXITY, POOR PATHWAYS ………………………………… 14

INEFFICIENCY IN CUSTOMER PATHWAY……………………………………………………………….. 15

SUPPORTED DECISION MAKING AND GUARDIANSHIP………………………………………………….. 17

REGISTRATION UNFAIRNESS A LICENSE FOR THE COWBOYS IN THE WILD WEST AND A LACK OF TENABILITY, A SHITTY BUSINESS MODEL ……………………………………………………………… 18

HOUSING, THERE ISN’T ANY…………………………………………………………………………… 19

LACK OF COLLABORATION ACROSS GOVERNMENT, HEALTHCARE, EDUCATION AND MAINSTREAM SOCIEY………………………………………………………………………………………………… 20

ZERO CRISIS CARE AND SAFEGUARDING, THE ULTIMATE STRAW MAN. ……………………………… 21

EQUIPMENT WASTAGE …………………………………………………………………………………. 22

THE CULTURE AND THE MYTH OF ADVOCACY ………………………………………………………… 23

CONCLUSION …………………………………………………………………………………………… 24

THE GAP BETWEEN THE FUTURE OF DISABILITY CARE AND THE NDIS TODAY. ……………………… 26

THE BUTTERFLY EFFECT ………………………………………………………………………………. 32

CONTACT DETAILS …………………………………………………………………………………….. 33

Snapshot of Issues

The low down and the vision

We are all familiar with trying to paint over wallpaper.

No matter how expensive the paint and how nice it looks initially it will no doubt come undone. You just can’t hide the rot behind the paint and the layers upon layers of fixes that didn’t take. Sooner or later you are going to have to strip it bare and fix the foundations.

At the tail end of the block funding age it didn’t look good. Funding continuing to flow after the death of clients. Funding never reaching the client. Some entities getting fat like ticks. All parasitic with little benefit to the host. The mess of who had responsibility for what, where information was kept, how it was kept can’t easily be identified. The lack of interaction between government agencies was terribly difficult but there was somehow some kind of link.

Whereas now the NDIS is often treated like a private entity. The magic fix all for every other government department.

Anything disability no matter what it is, is an NDIS matter.

How much was disability costing then? It appears no-one knows, or could readily find out. But it was too much and people were in a terrible mess.

The need for linking and efficient computerisation now cannot be overstated. Being accountable for delivering appropriate care should not be feared.

For the actual disabled people, it was incredibly variable but generally dire. Hence there was much painting over the wallpaper. It was an expensive system with an astounding lack of communication between each little autocratic enclave, each department its own little sovereign island of bureaucracy. Expensive, inefficient and few of the dollars benefiting the participant.

These same issues require addressing and the time is now. Each part needs to be seen within the whole, to enable a complete and wholesome outcome. It was like fifty chiefs who all speak a different language trying to change a lightbulb and the absence of a lightbulb.

The NDIS is a bureaucratic response designed to facilitate social change. To thrive within that model of change, providers need to become that social change. To seek only to profit, without adjustment of business model will end in failure for all stakeholders - of course including those they serve.

It was a reasonable expectation that privatising disability would result in innovation and new business models. To some extent it has however it has resulted in many trying different ways of doing exactly the same model. So now we have 1000 chiefs and a million lightbulbs and no ladder and no one who can do the task or coordinate it.

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However much the ever-present collective voices claim it to be otherwise, the issues were festering for decades and now need to be lanced and cleared away. Even the issues with safeguarding and the NDIA aren’t new, just different names representing a similar issue that was always present. Profiteering and vagabonds at the helm, a poor workforce and an exploitative culture.

Quite simply a lack of planning at the macro level, bureaucracy and inefficiency has grown a patch of thistles which are proving stubborn and extremely hard to remove. A casualisation and lack of training hasn’t just affected the disability work force it has affected the Australian workforce. It is not an employment model that has served competence, loyalty or pride in your job. Careers and vocations have become gigs. There were several factors that fed into the current cluster fuck. Inefficiency and incompetence coupled with needless repetition is delivered at great cost.

What is relevant and vitally important today is that we have some 630,000 souls who are receiving the NDIS. We have a very complicated and overly complex system which is either deliberately convoluted or insufficient. Time and collaboration need to be devoted to better design and streamlining.

Something which can be said for many business sectors who transgress over state and federal lines. It is actually easier across different countries in Europe and far cheaper to travel for that matter.

There is fraud, theft, incompetence and general wastefulness and an appalling attitude towards expenditure of government funds.

Moral liability is in my opinion the single greatest threat to the developed world. It will bankrupt us all if we do not pay attention. However, with competing and expanding human rights frameworks we cannot settle only for the country we can afford. We must aspire to and realise the Australian dream entrenched in all of our hearts. Progress will only come with deliberate endeavour and dedication. There are many old systems that need more than a lick of paint over the top.

We should not accept the perilous life of living at the mercy of the lowest bidder. We must prioritise what is valuable to us, cherish it and hold it dear. Our children and grandchildren can’t afford for us to waver now. The cost of living cannot equate to costs to our standard of living and cost us our values.

As much as it made financial sense to reorganise the disability care sector the intentions of the NDIS were benevolent. The intention was to raise the living standards of those with a disability. To see them employed and integrated into our society.

What we should have done in addition to a 600million dollar Royal commission was an overhaul of the actual sector and its mechanics and set it up with the intention of leaving the inadequacies and foul ticks behind. What a mistakata to makeata.

The resources however, such as expertise in the workforce, are lacking. The culture needs attention and the rest of government needs to get onboard.

Think of the public service as a journey on rail tracks and imagine the NDIS train chugging along gaining momentum and then finding that the section of government, the section of track missing is the bit that goes over the bridge and over that bottomless ravine. Those who a tte mpt to provid e service In th e old lns tltutl o n a l w a y Despite the incompetence and the fraud and the massive over untefind nableth e ir . buT o s sinessesu cceed complication, the system crashed and burned because of lack of IncIn thil u ssi on ne wr e quiresa ge o f collaboration between our various governments c h a n ge c- ah nda n se.“b e lns ’ th e and government departments. Federal, state and even local.

Many providers who failed to see the change and understand it. Those who attempt to provide service in the old institutional way find their businesses untenable. To succeed in this new age of inclusion requires change -and ‘being’ the change.

This change is the ultimate safeguard. To empower, inspire and enable people to actualise their vision of their best life.

As an industry we must innovate, we must evolve and adapt. The alternative is to fail. To give the right answer, one must know the right questions to ask

How do we maintain the dignity and quality of life for our most vulnerable?
How do we provide an opportunity of living the human rights all are entitled to and not limiting those rights to only what we can afford?
How do we ensure that the costs are necessary and the most efficient pathway?

Deinstitutionalisation, ideology and reality

Deinstitutionalisation is not something that I feel has been well understood.

Take a look at people in prisons and the military service or any such institution. We know that leaving that framework doesn’t necessarily mean that they are now instantly deinstitutionalised. It is more than just a building. It is a culture a panopticon that consists of ideas, policies, processes and beliefs. Culture is a very powerful thing indeed and doesn’t just evaporate with the absence of the buildings. It is true that for many the only thing that has changed is the building colour walls they look at. The lives they lead in the community are often less rich in fact and far more isolated. Ideology doesn’t just magically formulate a new world. It takes education and it takes time. It also takes an understanding and examination of what constituted institutionalisation in the first place.

What I can tell you categorically is that we did nothing to prepare people for integration to deinstitutionalisation not the disabled, the staff, society or the whole of government.

Is it the care routines that were practiced? Is it the belief system of staff or the public? Is it the attitudes of governments? Is it the beliefs of those that were institutionalised? Of course, it’s all of these things. To deinstitutionalise the participants even those that were never in an institution it means new models of care. A society that treats disabled people like people and not big children.

We have to do it backwards to some degree. First of all, we have the inclusive framework the buildings and then we infiltrate back to society, the staff, the government framework and the participant and their families. I believe that we need some kind of plan to do that. We need to educate and teach those tacit skills required in order to integrate successfully and educate the public on disability.

As much as I think integration at schools will be the key here to inclusion I also recognise choice. Choice of the other students and their parents. Choice of the children with disabilities and their parents. It’s a multifaceted process. As is much of everything else. Some things we will be able to make inclusive and some things are just not going to be possible. We can indeed have someone with a disability work in military intelligence but not serve in the front line. There are some areas that are closed off to the whole of society if they do not meet the standard and that will remain the case. However, in many cases changes can be made and will eventually be made. I genuinely look forward to that day because selfishly perhaps I will be seen for who I am also. Perhaps then we can use all of society and not disclose some because of their inclusion barriers. Technology will play a huge part in that process. Perhaps so will artificial intelligence as it will not know to discriminate and has no culture or social panopticon it serves.

However, for today’s world deinstitutionalisation though mildly assisted with technological aids is a process for hearts and minds. Of changing patterns and processes and not repeating the same processes and policies that existed in the institutions and expect a different result.

The intent of the institution was to disclude not to empower and not to enable and certainly not to enable anyone to live a quality life of purpose. It was care as in-house plant model feed water and place in the sun once in a while.

I think we need to let that garden grow.

Need for community strengthening

The other barrier that we faced with community care was the fact there are no longer communities as there were. Families and neighbourhoods are nowhere near as close. We build dormitory towns and not communities or villages. We cookie cut suburbs with the same companies. Go on I bet you can even name them. Harvey Norman, spotlight, BBQ galore etc. Town planning and community building just wasn’t a thing. Now we pay for it in our aged care and child care and disability care. That absence of social capital means we must build more robust safeguarding, pay more for assistive technology and staff on deck. We build child care policy to assist working parents to meet their child’s developmental goals with earlier kindy and longer child care hours rather than looking at more family friendly better quality of life models. The government pays dearly with social care costs, mental health costs and poor health. Community is our glue that safeguards, protects and develops. I think we lack imagination in our social policy. I think we like our business models must evolve. Who knows maybe it will even hold the key to climate targets. Cheaper housing as we won’t have to live on top of each other and more social capital in our lives. Cheaper for government.

However, the lack of community is a factor at play here just as the lack of planning for deinstitutionalisation and the attempt to paint over the crud. None of it helped.

The workforce

Support staff work across several industries. From child care, child protection, aged care, priate care and disability. There is a huge shortfall in the number of available carers.

A poorly qualified workforce with little or no supervision is not a good safeguarding recipe. The ever-increasing scope of practice required, ranges from schizophrenia to bipolar or forensic orders participants to peg feeding, respiratory care or just being able to competently perform CPR.Or I shall say it… even competently read the days of the week to give out the correct tablets in a Webster pack. Large numbers of carers operate through an ABN as sole traders have little choice or control and now work for those who insist on choice and control. Many moved to an ABN because they were let go due to non-compliance with vaccinations especially the covid one.

Too often we do not have information about the new participant and are not well placed to provide safe care or to mitigate risk or comply with occupational work health and safety laws for staff. There are serious circumstances that occur as a result especially in the sphere of mental health. There are many cases of totally untrained unprepared staff attending an individual who is well known to police and to SA Health or the mental health services and would only be attended by them

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with two staff AND police in attendance. Yet support staff attend alone and with no information. The closure of mental health facilities is no excuse to pile these people onto the NDIS to what becomes with untrained staff a babysitting service. It was opportunistic and scandalous behaviour by states to do this.

It is also an accident waiting to happen for both participant and support staff. Staff who are expected to accommodate the needs of an ever-increasing range of needs. It is no help to a participant with mental illness if their history is not known as it can facilitate enablement. Choice and control and demanding alcohol or tobacco or I have even heard of other drugs being used with staff in attendance. Or a participant demands their support staff assist them in their prostitution aims.

Self-managed participants are often diligent but there are many who think they can bargain wages amongst our SCHADS award system? Or who set arbitrary rules that contravene basic human rights like no phone or no use of the toilet no break etc.

Many providers send their staff out who end up poaching their client with false friendship and just set up an ABN. No idea how to run a business or pay WorkCover or tax or insurance. Unregistered don’t have to comply with practice standards or insurance or security checks or basic qualifications. The damage that has been done is huge. Plans don’t get utilised simply because the lack of competency and nobody seems to know what they are doing beyond sending out the rotating door of strangers. The main capacity building that’s occurring is how to scroll on Facebook. Beyond rostering there is no plan, no goal no progress. Just in some cases huge plans that result in staff of varying shades of shit turning up and sitting on their phones.

One gentleman complained when his wife’s amphetamines were stolen (she has narcolepsy) and the result was defensive erroneous and baseless complaints about their parenting which resulted in their child being removed because the totally untrained unregulated staff were considered credible reporters.

On the other hand, those that can are working to the point of exhaustion. Giving many extra hours. I have myself given personally around $1.5 million in pro bono work. From advocacy to actually turning up for someone and actually getting hands on and helping them out.

Near on 30% are suffering injuries and many are psychological. I have spent over $30,000 on training and I get paid exactly the same as someone who doesn’t even have a first aid certificate. In fact, as unregistered an untrained have the ability to charge more. I have seen some on Mable for $95 per hour. WTF

Throughout many industries professionals are regulated for the safety of people using those products or services. Consumers are able to choose which one of those qualified persons to use. Registering all providers gives the opportunity to lift standards and make the scope more efficient. Choice and control can only be provided to all Australians on the same basis to people with a disability in and as much as it is to the extent in the greater society.

We have regulation in many areas of society from teaching to medical to ensure that the consumer is safe and receiving the service that they and the community expects. It is also essential for insurance standards and limiting government liability. Regulation also safeguards from cowboys, scams and fraud. Not entirely of course but does provide a mechanism to control it to some degree. It also provides a fair and level playing field within the industry that it serves. Standardisation is fair. It is not fair to place staff in situations where they are finding it harder to stay afloat doing the right thing and potentially being paid less. Where insurance

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will be buggered up because they sure as hell will not pay out if the staff member is not qualified or competent. They’ll take the money but they won’t pay out I guarantee it. It is not fair on the participant who are perhaps unaware this is the case.

Presently, the effort and cost to be registered is prohibitive. Having spent in the order of $30,000 on training and audit fees delivers a feeling of unease and lack of equality when required to work alongside an unregistered - potentially poorly educated - and being paid the same amount. Quite frankly I think it’s entirely outrageous.

A training program that is fit for purpose will enable a scope of practice to be drawn. We need a scope of practice because the role has changed entirely from institutional days. There is not the supervision we are entrusting lone workers without support or back up.

In drawing a scope of practice of what can and can’t be done it tightens up use of funding also. This should fit entirely within government interests.

It is not clear and expectations are not clear as to what the scope of practice for a support worker is. But I will say to you the use of them as credible reporters inside families should mean at least basic literacy. We need to redefine credible and abandon support staff as any form of reliable safeguard if we chose not to regulate and standardise the role. In the interests of safeguarding this role must be regulated and must have a fit for purpose qualification. Proper understanding of what this role is entailing now is needed ASAP.

Regulation of the sector will enable support staff to be used in hospitals. We are cheaper than nurses and the cost saving and relief it can bring the health sector is not one that should be overlooked too quickly. Not to mention better patient care as nurses are able to perform the more complicated tasks and support can be there more often by the bedside.

Instead of farming grants as many providers do and employing people casually what about employing people in meaningful and supported work. Secure employment promotes a career especially if there is career progression and respect for the role.

We are at workforce failure and the elephant in the room is without any doubt the poor-quality workforce. Participants cannot train their own staff entirely and to do so removes choice and control from that person’s life as they are unemployable elsewhere.

The scope of practice that these souls are performing is absolutely amazing. From pseudo guardian to domestic servant to personal care to care coordination. These are the ones left doing most of the care coordination.

Support coordinators are generally support workers who wish to try something else. Often a few hours micro training and no idea what the role involves. It is often a pseudo guardianship role and sometimes serves as a case coordinator. People have no idea what they are doing and this is where much of the autonomy often goes out the window with misguided looking after and a lack of understanding of what supported decision making is.

Everyone has the right to a safe work environment. Everyone has the right to take pride in their work and aspire to career progression. Everyone has the right to secure employment and autonomy over their lives. Currently this is not the case and there is often a hostile and

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adversarial toxic culture between staff and their participant/employer. Support staff are left doing the lions share with no supervision or guidance in exactly the same model of care used in institutions. The same routines and the same business model as the old block funding era. It absolutely sucks. Only now they have to provide more service so for the nice buffer they used to have they have to squeeze the client and squeeze the staff. The old model and trying to build institution like arrangements into a private home is not possible so the safeguards are missing and the quality control. It needs a new model to suit the new panopticon we are creating. Square peg round hole it’s that simple.

Many support staff never see a care plan know nothing about the client if the medication they are giving is appropriate. If there are gaps in care, never speak to the support coordinator and use support coordinators to go around the participant. Who often also in an undefined role know nothing about their role.

Rather than exploiting the inadequacies of the sector as some labour hire do we need to enhance the sector to retain its sustainability and longevity.

Maintaining integrity, longevity and sustainability whilst encouraging those who wish to reach out and develop themselves.

However, the NDIA MUST adhere to occupational health and safety guidelines when costing supports. Far too often funding does not allow for safe practice and places staff in immediate danger. Safeguarding must apply to the support staff who are often working unsupervised unsupported as lone workers in poor conditions.

Disability Employment from support work to disability enterprise.

Sometimes unrealistic expectations due to a lack of tacit learning from within the community can cause barriers to inclusion. Of course, many things do such as attitudes and discrimination.

Employment training that is fit for purpose, just for disabled companies and new grant systems that allow disability add on to companies. A change in attitudes for many will be all that’s needed to open that door but for some they will need a little help.

Micro enterprise, development of for purpose charitable companies run by disabled people who employ disabled people. Show the world what they can do and everyone will want to employ their uniqueness.

Innovation is the innovation required to kick off employment of people with a disability.

In training the next of wave of support staff we need to train for what the role has become.

We also need to understand that many support staff are either families of or have a disability themselves. They need our support. So, do those that come to Australia on student visas or as refugees. Modern slavery and people trafficking can not be the business model to make social care viable.

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We need to offer stability in permanent employment and belonging in a community they do not feel ostracised from. The change in culture will bring teams together and forever dismiss the adversarial resentment that is often inflicted on these roles.

We will take anyone who wants to be a part of our vision and evolve them into safeguarding assets, productivity assets, community members and examples to follow as well as pillars in the small business community.

This will enable there to be safe, skilled individuals out there so those who want to deal with the smaller players can have that choice and control without it infecting the entire sector with bastardry. Which the unregistered free for all has done.

We must actively create a productive workforce that Australia can be proud of. One that self- safeguards both themselves and their participants. One that is more in alignment with the role that support workers do now.

and we can actively recruit from the disability community. Including those who work as family carers of loved ones who have hard earned skills. Beyond the carers pension we need their skills and they need the dignity.

Peers. mentors and advocates as well as some basic services all the way to people like me. I want to hand the baton on so no one goes through what I had to.

Aside from the disability sector of course let’s not forget disability enterprise and innovation and the huge possibilities that innovation can bring to not only Australia but the world.

Child protection and families with disabilities

It is an unfortunate reality that there are families out there who every member is on the NDIS and will be for generations. (I’ve seen a family with a million dollars’ worth of care everyone on a plan and grass you could plait and a bathroom you could skate on the limescale.)

As much as I have the itching compulsion to have several re assessed and re-educated and motivated lets for a minute pretend it’s just the case. In some cases, it is. It means that in some families the children will be assisted and the parents will be assisted by support staff. Currently this just does not work at all. Just as there are no policies for pets there are certainly no policies for families. Certainly not for maintaining parental and family integrity within the home. It is an absolute nightmare and far too many support staff be it as they are unqualified will state “that’s not my job.” There needs to be a framework around this. To empower families and help with the children. People with a disability have a right to a life, to marriage and to children. It is utterly shameful that far too many are having their children removed “because of their disability” or to quote CPS “because they are at the capacity of their ability” More like the million dollars going into that home did not afford anyone who was willing to do their job. Again, a serious case for training of staff but also a case for focus on these parental rights and the need for policy around it. Families can be strengthened and

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preventred from becoming a generational NDIS case just because a mother or a father has perhaps MS or MND.As was the case I witnessed.

Pets provide powerful companionship and psychological motivation one lady I know had a cat that lived outside the staff fed the cat inside and she came in to be friendly. They couldn’t be bothered just shoved the bowls outside and couldn’t just manage to site the animal. She was found weeks later her paw gangue green and caught in her collar. There is no family policy and no pet policy.

Convoluted incompetence and complexity, poor pathways When a plan is made the disability is considered and the functionality of that person. For simplification say someone with MS will have varying disabilities and just because they have that condition does not mean that they will all need the same supports. A care plan is drawn and from reports funding is assigned to that person. Along with goals. Then after all of that time and money and effort the staff attend and pretty much the same routines transpire in far too many homes. There is no glue no continuity and no there is also no plan or goal to work owards. Our focus being on the quality of life and purpose means that the care is a means to an end not the goal in care. This is essential if we are to avoid having dead end plans and people who just fester on them and become more and more dependant and more costly.

The understanding of many a Premier is that the disability money for disability care went to the commonwealth in order for the NDIS to do that. What is not understood here is disability. Nor is it understood that in integrating people with disabilities the whole 4 million plus of them into the community that means across the community. In everyday life.

We cannot afford to have up to five million people all on the NDIS. Not everyone with a disability can be on the NDIS. Only those who qualify. That people with a disability are so large in number and live and work across all sectors of government. From education to health, the NDIS cannot provide all of those services. Just as it is essential the government sectors cater for the need of interpreters or age or gender catering for disability is an essential part of having an inclusive society. Unless we are to segregate people with disabilities into that home pod on Mars and be catered for by only the NDIS. An NDIS shopping centre an NDIS school and NDIS hospital an NDIS workplace etc. What is lacking here is a lack of a modern view of inclusion and the clear issue of discrimination. People with disabilities have the right to access all government services and society as members of that inclusive society. The lack of preparation from society to achieve this and the resilience from the rest of government to have disability policies across every sector has cost the country billions and cost the quality of many lives.

The NDIS provides the care and technology and allied health so they are equalised to function within that society. As much as sometimes we would like we do not ask the lass behind the desk at services SA to wipe anything but our ATM card kindly to pay for registration of our vehicles. But we need to be able to get into the building. We need understanding and disability literacy on how to deal with us.

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I think someone needs to explain it to the states, happy to do so and happy to bring cake.

In addition to that understanding we either integrate a whole heap of departments so they work better together or we build a more contemporary framework where cooperation, that is intersectional cooperation occurs. I don’t mean big brother just Aunt Sally will do for starters.

Modernisation of process beyond digitising the same system, change it don’t digitise the same system. It is hard enough to go to a different hospital and expect them to also have your records. Disability is an intersectional issue which will need an intersectional solution. Much of the NDIS issues has been other departments such as social workers at hospitals madly trying to put everyone on the NDIS. The misunderstanding about services the lack of cooperation about services means people vulnerable people fall into cracks and this doesn’t help safeguarding.

Inefficiency in customer pathway

The current NDIS system is extremely complicated and convoluted.

It is total irony for me that we insist on having easy read for people in a system such as this.

There are many areas where competency is assumed and Everybody, Somebody, Anybody & Nobody ~ done, ndyet there are massive inadequacies and unnecessary cost. Th re was n lmporunt job to everybody was sur that somebody would do it~ In addition, this cost in fact further causes safeguarding SOmAnybodybodycouldgot n&rvhavebc!cau5<!done ,t,it wbutsEverybody’sNobody d djob• issues, poor plan outcomes and inefficient non-productive EverybodyNobody reall1edthoughtthatthatEverybodyAnybodywouldn’tcould dodoIt. 11.ButIt plans. nobodyended updidthatwhatEverybodyAnybody blamedcould havesomebodydone. when

The incidence of lack of knowledge and poor plan design is high. The government should not over compensate for this but encourage the sector to develop as much as I have outlined the issues within government this is more about the corporate failings.

There are many support coordinators who have merely done a few hours of training and call themselves support coordinators. How hard could it be? It’s just being a human yellow page, right?

Well wrong. Once the budgeting of the plan has been allocated they in turn assist the participant to bring the plan to life. The issue is too often you’ll see a large plan which is taken up with direct support and no therapies or a lack of assistive technology. Technology used correctly can encourage independence and remove the need for overnight supports. Is it any wonder such a great number some 68% of plan are underutilised?

Too many support staff who had too few skills in the first place have become support coordinators.

Or the favourite is to become mentor for someone which is code for hanging out or paid friend. No goals no productivity just a waste of time and money.

I don’t agree with this system at all. I feel it is more appropriate that there are no level one or two support coordinators and this role is performed within the team. The primary carer who has supplemented training and supervision works with the participant and allows them choice

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but also the knowledge of what supports they should be having or could be having and how that allows productivity in their plans more importantly their lives. A productive plan works not only to NDIS goals but to life goals. It helps people make goals and find a purpose and productivity and passion in life. It moves people away from greater and greater dependency and places independence and purpose in its wake. It allows a supported decision-making framework in the care framework and keeps the participant in the driving seat so to speak.

There are very few productive plans. Most plans are underutilised because of lack of knowledge on how to use a plan properly. Consider that in your data analysis what if all the plans were at 100%?

Remember we are recovering from a poor system. It isn’t magic there is work to be done repair and rehabilitation of people’s lives from their skills to their wellbeing. Learning to focus on their lives not just their disability. It won’t all just happen with magical thinking.

As far as support coordination and complex care is concerned this individual must be degree qualified or have extensive experience. Has extensive experience and perhaps medical knowledge or access to it. Certainly, a clinical background would be useful. These roles are for extreme complex care.

Our guardianship system across the entire country isn’t working well the reality is they are more like poor support coordinators than they are like what we would think a guardian is. There is a massive opportunity here for using those support coordinators to transition to a supported decision-making framework. I am not a fan of guardianship it doesn’t respect the autonomy of an individual its costly and very shall I say skeletal in practice. We would improve the service of the guardians and create a more contemporary supported decision-making framework in its place. Guardianship has increased hugely since the NDIS and this is because the gap between capacity and life skills was never filled in preparing people for integration. This presents in sometimes unreasonable expectations or behavioural concerns and sometimes needless guardianship in place of education and supported decision making.

As far as the support coordinators are concerned we would have the possibility of better continuity of supports better knowledge of the plan a reduction in costs for their plan and better outcomes.

Plan managers are for the best part certainly number crunchers however there are a few who also provide advice as to what is and isn’t allowed. I appreciate that there are those who call them gatekeepers because they were denied a thermomixer but the ones I’ve encountered have been a good service to the NDIS and good value to the participant. Yes, their role could be modified to also be navigators but id empower them to do more in any case.

Some 35% of providers didn’t make a profit and many only make around 2%. So, the only ones making money are the cowboys. Which are almost actively encouraged in the current scheme.

Something has to give the business model must change in alignment with the change in vision.

I’ve seen participants receive a wage from unregistered providers. I’ve seen unregistered providers so ill-informed they didn’t know what care they were missing for the client. Support coordinators who place every member of a family on NDIS and then under guardianship. I’ve seen it all and generally it’s a poor pathway system with no glue and a lack of consistent competency and proper definition of roles in between.

It needs redesigning.

Supported decision making and guardianship

This is a very misunderstood area of care that needs significant attention in order to be legally compliant and have the dexterity to serve its clients well. Many guardians have a huge list on their books and become little more than accommodation and care coordinators rather than what the term guardian implies.

Families become isolated rather than utilised often because of limited resources accusations can’t be properly investigated. Often guardianship fails who it is meant to serve and doesn’t even manage to protect funds it needs for itself let alone the clients. Those who would be abusers don’t have to look after their charge but are still able to reap the financial benefits after death. Its clumsy doesn’t fit with United Nations Human rights laws and is a significant risk to the vulnerable and to government. I have witnessed stories of someone with narcolepsy falling asleep in a support coordination meeting and waking up to find they had been put under guardianship of the support coordinator. That should never have been possible on so many counts. In addition, the support coordinator then proceeded to make sure the family was entirely farmed well and everyone was on the NDIS.

Support coordination is just a similar level of guardianship. Case coordination in my understanding is the better way to go. However, it is worth noting that for way too many they have been put under guardianship since the NDIS in order to be farmed. On the other side guardianships have been rising since the NDIS because of risk management and a lack of information or cooperation from the NDIA and others. This places providers in risk situations where funds are depleted by the participant who does not respect the schedule of supports. Or who cannot be managed because of complex behaviours or behaviours of concern. Cooperation would assist better than guardianship which in all honestly most providers would not be willing to do unless it became impossible to manage otherwise. There is some truth telling to come I think.

So, the issue is rather convoluted.

What would work better in addition to cooperation with handovers and such would be a supported decision-making framework. At the moment this is little more than a buzz word and I think very few people understand what it actually is. It is not just a trendy word. It is also in my opinion an essential facet to deinstitutionalisation. In order to assist people to integrate into society and society to integrate into a more inclusive society supported decision making must flow in many directions. It’s kind of like an active listening framework. It is something that has to be done on a daily basis. You can’t just sit someone down and explain the situation and say now make a decision. It is teaching that person to decide and it’s an everyday all-day process integrated into every action. Enabling them with the right information. Knowing yourself how to gain the right information. It’s about having those checks and balances and follow up. It’s about safeguarding that framework

It must be taught. It has to learned by support staff, practitioners and participants and their families.

It also requires and in fact I think it assumes a lack of bias or authoritarian self-glow shall I say. No, you don’t know any better because you have a few degrees it isn’t your life. Discrimination and deinstitutionalising our preconceptions are an essential part of this process.

Certainly, within our healthcare framework this needs to be rammed in rather hard at the moment I would say. I will say I find it incredibly amusing and lacking of perspective when I’ve seen someone working every hour god sends frazzled and fed up telling me my client has no quality of life. I am happy to volunteer my time for a little détente to clear that one up anytime.

Registration unfairness: A license for the cowboys in

the wild west and a lack of tenability, a shitty business model

There is quite a flurry in the disability community at the moment due to the talk on registration. This is caused by two factors. One is that people are not informed well on what an unregistered provider is and the truths around that. That insurance, qualifications, vaccinations, security clearance are all optional. That the NDIS actually has no power over them and they just have to abide by a very broad code of conduct. Secondly, I think it’s because of the huge workforce shortage and panic. They feel that registered providers have less staff and they have some option if they need it to fill in shifts that a registered provider may be unable to fill. That’s just a case of tweaking a few parameters and informing The greater public on a few home truths. Certainly, those advocates who insist on being masked due to covid may be astonished to be also advocating for not being vaccinated.

There is a third reason it’s a little more complicated and that is an issue of trust formed from past experiences and the belief that less regulation gives them more control. We need to fix the trust.

In addition, I would like to say I’m small currently but have big plans. My podcast has had over 12 million views however. But I have worked really hard and it has cost me a fortune to be registered and for the audits. No not all are the big man companies. But I will agree with my peers in saying too many of the old stay painted over ones have been able to flourish and grow in this climate.

The covid accommodation for international students were just crazy allowing them to work unlimited hours when Australian residents and citizens are expected to be limited by the SCHADS award. So, it meant an influx of international unqualified students coming here and working until they dropped. Having lived in Saudi Arabia and witnessed worker exploitation on the lines of slavery I am horrified to have seen it here. There was even a case in Adelaide of a 19-year-old Chinese man working as a cleaner who dropped dead on shift. It isn’t all cowboys its residents here exploiting workers also.

Suffice to say that the current business model is not tenable. I believe that as providers we were supposed to change to meet the changes the new system is addressing in a modern world. We have to get smarter and more innovative and less greedy.

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Housing, there isn’t any In South Australia alone, there were around 66,000 housing trust homes once upon a time. Currently there are now just 33,000. Many of those are empty; many uninhabitable. Many that require maintenance - just to remain habitable. The maintenance bill for these houses is several hundred million dollars a year - not even accounting for renovating or modernising.

Social housing costs relate to managing the tenancy, maintenance and bad debt. The outcomes relate not only to there being a home for someone but to the social outcome for that person. Their job potential improving, their economic status and wellbeing are all factors that are considered.

The social demographic accessing these houses has also changed over the years and it is no longer the trusted source of housing for people with a disability or the elderly and single mothers.

Few of these are accessible. For many of these buildings it’s only the asbestos that holds them together.

The benefits of social housing are felt not only in the $1.40 return per dollar spent but in the wellbeing of the entire Australian community. The true cost of social housing and the socio- economic costs of this sector is incalculable as many sectors of government from welfare to disability and mental health services overlap each other and there are inefficiencies here just as there were with the previous disability systems.

The greatest area of dissatisfaction from surveys was maintenance and feelings of isolation and loneliness in social housing enclaves.

Building stronger community can strengthen the housing trust and could facilitate collaboration and lowering costs of maintenance and lessen neighbour disputes and the barrage of other complaints that come each day on their call line. Also, placing extremely vulnerable people next to the wrong social dynamic is not helpful, however much it might delight the neighbours to have such easy pickings close at hand. Communities have been actively disrupted by this attitude. In addition, the NDIA expecting ILO and social capital to come from neighbours in such “communities” is wholly irresponsible. It is also nigh impossible to get staff in some areas because of the danger levels.

Much of the accessible housing the housing trusts offer is far from being accessible and the costs to make it so are high in relation the NDIS expenditure.

Affordable private rental is difficult to find and there is high chance it will be inaccessible. It is also an issue having multiple cars outside and multiple rubbish bins. Something not considered with group homes. Or who their neighbours would be.

Purchasing a house is becoming something that few can even imagine let alone realise.

Many housing trust enclaves become pseudo government hubs with various and multiple government resources accessing people there and overlapping of services. The outcomes for the costs of services being delivered is not tenable or justified by outcome.

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We need to build and strengthen communities. To save in mental health costs, in social care costs and in safeguarding not only our vulnerable but our communities during economic crisis or natural disaster.

We need housing but we must think hard as to how this housing is produced. We must consider intergenerational care and housing being affordable to also live in by being energy efficient and self-sustaining.

Above all the housing must provide secure and long-term tenancy.

lack of collaboration across government, healthcare, education and mainstream society.

Healthcare just isn’t accessible to disabled people.

Certain scans and care are not accessible. Despite my many attempts to speak to any health minister at all I have not been able to get any traction at all. The cost of this and co morbidities on disabled people and their plans would be phenomenal.

Interestingly enough the answer I received as I did when speaking to certain Premiers was “That’s and NDIS matter” ANYTHING and EVERYTHING disability is not an NDIS matter.

I believe we should focus on health ability in order to live your best life you have to be the healthiest you can be. Sounds reasonable doesn’t it?

Often times poor care and poor healthcare management lead to heavy reliance on plans and good life productivity and outcomes. Hence also I will mention again trained staff who have some idea of this. Seriously I’m going to put a DUH right here.

Healthy participants are cheaper participants. They are also less problematic to care for.

The issue with closing down the institutions is that there is no carer of last resort other than the hospital system. Hospitals just aren’t equipped to deal with this.

By the South Australian government’s own admission, the sector did not have the skills to provide the necessary complex care for high intensity high needs participants. Then the wonder as to why so many are finding their way with tailgate warranty to hospital. Just as the aged care sector does the same the community sector allows for basic looking after with little skill, supervision or accountability. Transitional facilities sound great and lessen bed block but in reality, unless the workforce comes up to speed and there is somewhere appropriate for them to go there are going to be a lot of “transitional” rather institutional like facilities.

Health and health ability are an essential part of bringing down the costs of care and mandatory to quality of life. Too many suffer from comorbidities that should have been avoided.

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zero crisis care and safeguarding, The ultimate straw man.

Safeguarding is something that needs a great deal of attention. Just what are we safeguarding? The funds? The person? Their outcomes and goals? The support staff? Or perhaps the system?

I think it’s a matter of considering all of these. Too often information about a participant is not handed over and unqualified staff attend someone and know nothing about them. Sometimes they are on forensic orders. Sometimes there might be serious infections or conditions that we are unaware of and can’t safeguard ourselves or our other clients or reasonably provide quality or appropriate care.

I think to some degree the term choice and control has been mis understood and is not used correctly and reasonable and necessary and social responsibility need to be also understood.

In better understanding the NDIS better information better communication it will serve everyone involved and facilitate cooperation.

Many tell me that since living in the community they have become more isolated. Access because of poor transport options, or staff that don’t drive, or distance or access to services have placed them in a disability bubble. An unprepared society has no idea about this human rights model of care. Many still treat people with a disability like children. Just ask a teacher about integration and watch the reaction if you don’t believe me.

You won’t get it by demanding it or by lecturing about ableism it has to be done through positive education. Most people still feel sorry for and treat people like children with a different set of rules and parameters.

So how does employment work? How does it work going to a shop just a shop for instance? How many places and including government services have no access physically and no understanding about people with a disability?

There is a large gap in legislation here but especially in education. It won’t happen with bullying people and shaming them it happens by including everyone and showing how for their part they are a part of this change in society. Positivity.

A community that facilitates the participant, friends, children, spouses and parents. That employs people not just workshop people. That educates the public and shows them is a solid step across that gap. Placing people in the community who need support for every aspect of their lives is a very expensive exercise. It is entirely like placing people on mars. To leave the pod of safety you need oxygen and a suit and a special vehicle. You need special food and its extremely expensive. Integration remains the most cost-effective way to safeguarding and community is the way forward to integration. But we must include everyone. Inclusion has to be inclusive. We must take all of society on this journey. Too often we fail to do so. Community is no doubt the best safeguard there is. It provides a buffer in care and it provides that discerning set of eyes to speak out for others. That won’t happen in neighbourhoods where people don’t even know their neighbour.

Providing the community visitor scheme sounds interesting but it lacks any robustness because exactly where does any reporting end? People end up in hospital. Domestic violence…. In hospital…. Neglect or abuse or plan ending its all the same hospital is the last resort.

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We do not have crisis care.

We have transitional facilities to make the bed numbers look good and we in South Australia, and correct me if I’m wrong, but don’t we still have just shy of 500 still in an institution. Shouldn’t we be discussing those still in institutions? Shouldn’t we be closing the specialised residential homes? AKA also institutions?

We need to consider our workforce and our community and the participant pathway and build safeguarding into a quality framework that results in more than a coroner’s report or some report sent into the ether. We need crisis care and an intervention team beyond a few community visitor volunteers who may or may not be able to detect abuse in the first place.

Equipment wastage The value of some of the equipment out there is absolutely staggering. What is more amazing is some of these pieces of machinery are left uninsured. This leaves a large risk to government to replace and repair machinery that has been broken by the participant or the carer or accidentally. It is worth to note that the weight of some of these wheelchairs with a participant is sometimes around the 300kg mark or more. It is not uncommon that furniture, or cars even on the roadside or damage to others or other items does occur. These machines are quite powerful and are capable of doing significant damage so there is also an insurance liability to others such as staff or family or public. I have even known a participant do a hit and run when swiping a car on the side of the road they did over a thousand dollars damage. Damage to the machine itself then often becomes the liability of the NDIS to repair. Perhaps in some cases there is some kind of insurance in place but is not common. We feel that insurance is essential to proper care and we should be encouraging it to protect what they value.

Often when machinery does get replaced it then sits in the backyard unused. Sometimes it is sold and more often its left in the backyard whilst it would be prudent to have some kind of reuse policy it would also be beneficial if there was a more integrated recycling policy. For those within the NDIS who could encourage people to buy certified safe second hand or pass on outside the NDIS to other sectors. Whilst this does occur sometimes it is a little bit of a cut- throat market and not always benevolent.

The culture and the myth of advocacy

There is a culture problem within the disability sphere. It is sometimes toxic and malevolent. Within support staff there is bullying and lack of peer mentoring due to the harshness of employment conditions. This results in poor continuity of care as staff compete for shifts.

Between the participant and staff there is often a beautiful symbiotic working relationship that can last decades but there are also maladaptive behaviours from both sides which can create an adversarial relationship. There is then hostility between the public and the NDIS NDIA with poor behaviour towards staff. There is an abhorrent culture towards government funds and a general lack of trust towards government. There needs to be more respect towards government and the huge endeavour that the NDIS has been and the lives it affords people. That we scrutinise and wish to do better is a credit to our country. There is also an issue within the disable community of a feeling of a lack of leadership from the community. That many people with a disability feel that they are not represented by those who claim they do so. That they do not represent the average Joe or Jill in the community. Culture and psychologically safe spaces are something that I feel very strongly about and I think it’s something we need to do some good will work on.

As far as advocates go there are a lot of amazing people who donate their time and resources to helping and speaking for others. It is paramount when we do so that we remember the honour it is to speak for and not instead of and that it is their voice we are carrying and not our own. I think we need to consider beyond the navigator framework should it get to fly an advocacy one. One where it is independent and it is guaranteed that it is correct information that is being provided. Often it is not and causes greater fear and distrust and panic in the community. Before even the end of Hon Bill Shortens speech recently the naysayers were front and centre and broadcasting ill researched and not properly understood information. Misinformation and social media go hand in hand these days and it is unpreventable. However, it is possible to have some sources of information that are guaranteed to be factual and an advocate should be one of those sources. Sadly, it is not always the case. I think there need to be specialised disability and NDIS advocates. I think there would be a lot less confusion if there were advocates not pushing plans that are unobtainable or unworkable or unreasonable.

Conclusion

Sure glad the hole isn ·t at our end.

The NDIS will only be radical reform if it survives the test of time and manages not to blow out to the projected $100 billion dollars. More so in congruence with that statement that it is not also a mess and is failing despite massive costs to meet its vision.

For that to happen its more than just a question of the NDIS needing to reset its customer pathway and policies it is a whole of government approach. Disability is a matter for the whole of government and the whole of society.

The fact that a disabled woman can’t access pap smears or gynaecology or a mammogram is not something the health service should be proud of. Its discrimination and its segregating a sector of society. The social contract between citizen and government is basically one of protection and trust. How people are valued and treated and these social policies reflect on all of society.

The health system needs to step up and legislation needs to reform the health sectors will to expedite this process. When speaking to an advisor of a health minister in recent months the attitude was they had no idea that healthcare was not accessible. Try getting a power wheelchair into the swanky new SAHMRI building, try showering someone in a commode chair in the RAH or explaining an advanced care directive and the quality of life to a hospital registrar. It needs work. Try getting one of the 26 “special dentists” in the entire country before you die of old age. I had no idea disabled teeth were so different.

If human rights don’t matter then consider the cost of a lack of a health ability policy has on NDIS plans because it is significant and bears direct relationship to cost of care.

That being the DE medicalisation of disability is all and well however in reality when we need to deal with catheters, schedule 8 medication, severe psycho social, mental illness, trachea, diabetes and subcutaneous management, specialised bowel care etc it would seem medicalisation didn’t know it was irrelevant to care. It grossly affects the plan outcomes. As much as function is important if it is known someone has a severe psycho social issue and is on

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forensic orders then perhaps that will affect their hours? There are countless situations where medical is a necessary parameter in providing care. In DE medicalising it has confined support staff to bum wipers and has failed to recognise how our role has changed. What the role is now that we are performing and so in not having a scope of practice it means it is not understood as to why there needs to be appropriate training.

I challenge you all ask your hairdresser next time you go will they accommodate a wheelchair at the basin? You will be surprised how basic aspects of life are not available to people. We did not prepare society and society has absolutely no idea how to accommodate people with a disability. This has meant plans have had to be heavier and supports specially developed and activities in new and opportunistic business endeavours cropped up because society failed to do so. Government failed to plan. When most government departments aren’t accessible how will that reflect back into society?

We failed to prepare people and failed to educate people we just closed the buildings. Well some of them .There are still institutions in this country and they need to close.

Plans are often wrong because of poor report writing there needs to be focus on occupational therapists and reports. I have had one lady represented as being in a wheelchair when she was not. One man whose plan failed him despite a $6000 report to be represented properly as not actually having a bathroom. The cost of reports has risen hugely since the NDIS.I had one guy who it cost $16,000 in OT reports for a $16,000 shower chair that was not fit for purpose.SO a $32000 shower chair that was utterly useless I mean seriously it was even a bad clothes hoist. Yet safeguards did nothing. The participant suffered greatly waiting around for piddling about. As he did when they took $58,000 for a wheelchair that six months later hadn’t arrived. The poor outcomes shortened his life and made the time he had far less comfortable.

It is important that plans fit the participant and reports are correct and that there is a review or scrutiny into what qualifications people have. If they need new qualifications designed let’s instigate that. What we are doing is new here we expect there to be problems.

I would consider bringing back a domiciliary care to prevent machinery laying to waste. Often an over anxious OT will get it wrong and it has to be done again, or the participant needs change and things do change. But the equipment would serve someone else. Are we such a rich country we can afford to have such waste?

Capacity in law should be assumed and I agree with this. However, it is not clear as to whom determines capacity. In some cases, an OT will in some cases a GP in others a neuropsych. I think it is essential to protect people with a disability that this is done properly. That it is confined and exclusive to one independent profession. It will save a lot of grief and skull duggery.

There is a possibility that the navigator scheme will be fantastic however I do think it would be fair if people had access to specialised certified NDIS advocates. At the moment every man and his dog are an advocate and it’s a bit of an issue. I think the formation of such a thing with training with be a bonus and provide an access point which would be more valuable than the community visitor scheme. Especially as the NDIS is so specialised and complicated. This would show transparency good will and develop trust.

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The gap between the future of disability care and the NDIS today.

With the advent of the long debated National Disability Insurance Scheme and the move to deinstitutionalisation a yawning gap has now 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 yet have a disability that gap is a chasm.

What policy makers over the past ten years failed to consider was where will disabled people actually live in their brave new community care world?

For that matter I don’t think it was considered where any of us would be living as there aren’t enough homes and so few are accessible, be that financially or literally.

Simple things like where exactly will disabled people get their hair done, shop, go to a dentist, work, go to school in our far from inclusive society.

Minister Shorten wants the NDIS to be more than “an oasis in the desert.”

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But I see it more like a home pod on Mars.

It’s difficult to manage life even if you are one of the 610,000 participants who use the scheme, even harder for the remaining 3,800,000 left behind to brave the desert alone.

Yet it remains essential even if it is the bare minimum because it sustains life in a hostile climate. But the cost of leaving the home pod is all too high and cumbersome.

Deinstitutionalisation has left many with disability feeling like a square peg in the round hole of society.

For too many deinstitutionalisation simply meant closing the buildings.

It has become vividly 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. Institutionalisation maybe vanilla coated but it is still very much alive.

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 families and our social care policies, including aged care the absence of community, neighbourhoods, strong family and friend networks can be costed directly into our social care plans both disability and aged care. We can also measure it in our mental health.

Many are more isolated in the community with unsupervised and unqualified care with no access to further resources or life outside their home or confines of their bed or room.

In addition, healthcare isn’t accessible. Disabled don’t have access to dentistry, obstetrics, medical imaging for starters. Poor healthcare means poorer health and higher costs in care. Do we speak of this when we discuss NDIS costs? The impact on poor access to health can be directly costed in plans. Just like the lack of community.

Why aren’t we implementing healthcare inclusion frameworks like America currently are?

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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 back up.

With an administrative heavy infrastructure despite its shiny policies it seems we fostered intersectional incompetence and too often little more than Ponzi care.

We lack the skills to provide the support and these people end up still languishing in institutional care, nursing homes or our hospitals or so-called transitional facilities. Too many still live in institutional care which have been left out of the NDIS vision.

To make hospital bed numbers look better the disabled and elderly are pushed around and posted out of the way like an avoidant child does with an unwanted piece of broccoli.

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 already unqualified workforce is expected to perform in a far broader scope that’s just getting bigger.

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 or even considered and the proverbial parcel was passed to the NDIS and an unwitting but greedy private sector.

There are many now who have noticed that the parcel passed to them is ticking.

There’s more than one Premier astonished by the realisation the NDIS doesn’t cater for ALL disabled. The health care system is struggling despite shoving as many disabled and elderly wherever they can to free beds. Yet they just keep coming.

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 near a million dollars going into that home and the home is uninhabitable.

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The NDIS budget this year is 36.7 billion and pitched to go to 64 billion a year by 2030.

It is not profitable for business or tenable for government yet it seems we can’t seem to deliver a quality service at any price?

Clearly delivering institutional based care into the community that is not accessible is not the best business model.

There are plenty of providers fleeing the sector stating it is not tenable and there are 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. We are likely to end up with a handful of huge providers and the re-emergence of bulk and cheaper care.

I would love to know the ACCC’s opinion on competition law and the unequal registered versus unregistered provider NDIS system. One group has to comply with practice standards, reporting and frequent costly audits. Whilst the other basically just needs an ABN if at all.

Unsurprisingly of course when examined registration compliance doesn’t always guarantee a good outcome. It doesn’t safeguard but not registering does give a competitive advantage to cowboys and gangsters. Which is why there are now only 12% which are registered.

Australia has now 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? Human trafficking fits perfectly into our student visa and mass migration framework. It’s easy money for unskilled work.

We need to understand that Deinstitutionalisation was not just about people being dumped into the community and closing those buildings. It was about having a life, and as a fully integrated member of the community. We need to facilitate that outcome with more than magical thinking and a lot less profiteering.

Government across the board must comply with the forty-year-old disability discrimination act. Business and community must be more accessible. The answer was never the popping up of thousands of little businesses to compensate for the lack of access to exploit that reality.

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Disability should not be patented and catering for access should not be proprietary it should be universal.

The NDIS can be the pivot and the fulcrum to societal change. It should be more than a breeding ground for exploitative endeavours in so called specialised NDIS services in favour of just being able to access the community like anyone else does. Hence why a disability shower chair costs ten times the amount of a shower chair without the disability or NDIS tag

No NDIS plan however big can compensate for a lack of an accessible or disability friendly community. Neither can the thousands of opportunistic NDIS friendly services. The lack of access lack of contemporary understanding of the human rights model or particularly the archaic attitudes in healthcare.

Only when these gaps are addressed can the NDIS equalise just for the disability of the person and not have to compensate for the whole of society.

We don’t need NDIS dentists, NDIS hair dressers, NDIS transport etc. We need an accessible community. Starting with whole of government in support of the NDIS. That is beyond any foundational supports which will continue segregation from the rest of community. There is no better safeguarding than community.

It is a better outcome for every Australian if our quality of life is not measured and determined or indeed limited by the dollar.

It is in everyone’s interest that we measure the quality of the lives lived.

I don’t think any of us would want to live the alternative?

It would seem a dystopian future we should seek to avoid. Even if it is in part everyone’s current reality. How many languish on medical waitlists, brave the pot holed roads and are suffering this cost of living crisis unable to find a decent home?

It’s essential to prioritise accessible and disability-friendly communities, update healthcare attitudes, and embrace human rights. We need to involve entrepreneurs with disabilities in decision-making at the stakeholder table not just in codesign as a token gesture.

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We need to foster new and innovative models of care in favour of cutting costs in an old system that never worked.

Beyond the NDIS the whole of government at every level need to step up and support people with a disability.

An inclusive society with a human right focus benefit everyone. The issues plaguing disability care—accessible housing, healthcare, education, employment, and quality of life—affect us all.

This is a multifaceted governmental challenge that must be addressed to counter the continually rising costs of the NDIS, exploitation and segregation and finally end the appalling outcomes in care.

We don’t need a ramp we need a bridge and we need it now.

Claire McCrackan is CEO of Carers and Advocates Australia Pty Ltd a registered NDIS service provider. Creator of the Butterfly Effect podcast with over 12million views in the last year. She received an enablement award for best community advocate in Australia 2023.Founder of the model village concept offering a village sanctuary that frees people from the burden of day-to-day care so that they can focus on their life’s potential.

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The Butterfly Effect

The butterfly effect was quite accidental. It was created as a part of the environmental analysis below. The episode was placed on you tube as a placeholder and it gained traction so I put it on Facebook and it took off. It now has had nearly 10 million views across ten episodes. It is yet to actually be placed as a podcast on Spotify and Apple even!!

Yet we have discussed a wide range of issues and interviewed the Vice President of the AMA to the Leader of the Opposition to unfolding the secret life of a support worker and the prospect of the fifth industrial revolution.

We are now seeking sponsorship to expand the podcast and follow this journey as a part of our systemic advocacy and inclusive discussion and education.

You can watch the maiden episode which is the environmental analysis.

Scan the QR code or click on the picture to watch

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Contact Details

Claire-Louise McCrackan