Independent Assessments inquiry Submission March 2021

"This NDIS bears no
resemblance to what we
fought for all those years ago.
I am tired, I am devastated,
terrified what life will
look like for my children
when I am no longer here." 

Joint Standing Committee Inquiry

We want to begin by thanking the Joint Standing Committee (JSC) for the opportunity to contribute to this critical inquiry. The changes being proposed by the Federal government and the National Disability Insurance Agency (NDIA) represent the biggest changes to the National Disability Insurance Scheme (NDIS) since it began in 2013.

Yet despite the scale and magnitude of the changes, and the impact they will have on people with disability and their families, it is clear that the government and the NDIA intended to steamroll them through without broad consultation or scrutiny. This is completely unacceptable for a scheme which claims to put participants at the centre of all it does. It is also in contravention of the principles of the NDIS Act.

The work of the JSC has always been critical to the good governance and implementation of the NDIS. But now more than ever, its scrutiny of the way the scheme is being governed and implemented is vital to ensure the scheme meets the needs of the people who depend on it – and to ensure people with disability and their families are able to have their say about the operation of the scheme they fought so hard for.

In short, while all the inquiries that the JSC has conducted over many years have been important, this inquiry into independent assessments is perhaps the most vital. It represents the only independent scrutiny of the biggest reforms to the scheme so far in its short history. Reforms we believe will reshape the NDIS into something fundamentally different from the scheme it was intended to be. And most importantly, put at risk the support on which people with disability and their families depend.

It is true that after much protest, the NDIA did announce a limited consultation process at the end of last year. The NDIA released a series of consultation papers which briefly outlined some of the planned changes and invited submissions. Every Australian Counts (EAC) encouraged everyone in our community to take part in these consultations – either by making a submission of their own or by contributing to the submission made by EAC.

But unfortunately all that consultation process did was lay bare the determination of both the government and the NDIA to proceed with these reforms regardless of the concerns of the community. It would be something of an understatement to say that the NDIA’s consultation was deliberately limited from the outset. The NDIA made it clear in both the papers and their public information that the consultations were focused not on whether the planned reforms should go ahead but simply how some aspects of the planned changes should be implemented. The NDIA were not even consulting on the full package of reforms, only some aspects of the changes. For example, the papers heavily focused on how changes should be communicated rather than the mechanics of how key features could or should work.

Despite this deliberately restricted approach, we strongly encouraged people to take part. We did this because we believe it is important that the NDIA hear how people feel about their planned reforms. And most importantly because we believe significant changes to the NDIS should not ever go ahead without the opportunity for people with disability and their families to have input.

As a result more than 700 people contributed to the EAC submission to the NDIA. The NDIA itself received 769 unique submissions. But despite that overwhelming response, The best the NDIA could say was the results of the consultations were “mixed”. And that people with disability and their families and the organisations that represent and support them were “concerned”. Further the NDIA went on to suggest that some of those concerns were fuelled by misunderstandings or misinformation about the proposed reforms.

From where we sit, that is not an accurate picture.

Many of the very real questions that have been asked for the past six months by people with disability, their families and the organisations that represent them have not been answered. And the information that has been released by the NDIA has not always been clear, simple or transparent. So if “misunderstandings” persist, we would suggest is the responsibility of the NDIA to answer questions and provide clear information to address people’s concerns.

But more importantly we would also suggest that many people with disability and their families do understand what is being proposed. They understand all too well what is at stake. And that is exactly why they do not want these reforms to go ahead. And having their very real concerns, fears and objections dismissed as simple “misunderstandings” is patronising at best, deceptive at worst, and certainly doing very little to reassure people that their voices are being heard or that these reforms have their interests at heart.

And finally – just a few days after the consultation period closed, the NDIA announced the panel of providers who would carry out the assessments. This again reinforces the view that the government and the NDIA are determined to progress, regardless of the information provided by people with disability, their families and the organisations that represent them during the consultation period.

All of this makes this inquiry even more critical. We plead with the committee, the government and the NDIA to listen – and then to act. The planned changes do not have the support of people with disability and their families.

And there can be no misunderstanding about that.

About this submission

When the Joint Standing Committee announced this inquiry, we put out the call to our community for people with disability and their families to have their say. We encouraged people to make their own submission directly. But for people who could not, or did not wish to do so, we opened a page on the Every Australian Counts website so people could leave a message in the way that worked best for them. To avoid duplication and to cut down the workload for everyone, we let people know that their messages, stories and ideas could be provided both to the NDIA in response to their consultations as well as to the JSC if they chose that option – which most did.

More than 900 people responded. This alone gives the Committee an indication of the strength of opposition to these reforms.

The stories, comments and ideas of these 900 people are contained at Appendix A. We have chosen not to edit these submissions. They are as they have been provided to us – swear words and all. We have chosen only to remove details that could possibly lead to the identification of individuals. This again gives the Committee a good indication of the strength of people’s feelings about these reforms.

What you will find on the pages that follow is a short summary of those 900 submissions. While we have provided this summary, we strongly encourage all members of the Committee to read all 900 stories. There is heartbreak, fear, anxiety and anger on every page. This must be heard.

Finally, this summary only focuses on what people provided to Every Australian Counts during the submission period. In recent weeks a draft of the proposed amendments to the NDIS Act and Rules has been leaked to the media. What was contained in that draft was alarming to say the least. The leaked draft confirmed many people’s worst fears about the true intent of the reforms. The government has not yet however released the final exposure draft of the proposed amendments to the NDIS Act to the public. Should they do so during the course of the Committee’s inquiry we would respectfully ask the Committee to allow EAC to make a second submission to the inquiry to allow people to have their say on the proposed amendments.

So after all that … what did people say?

What leaps out from every submission is just how much fear, anxiety and anger these changes have provoked.

This must be seen, heard, acknowledged – and then acted on. The planned changes do not have the support of people with disability and their families. EAC received only one submission from a person who was supportive of the introduction of compulsory assessments. For everyone else, their questions remained unanswered. Their concerns remained unaddressed. And all that was left was an overwhelming hopelessness, fear and anger that far from making things better, these changes will result in people with disability being left without the support they desperately need.

As you will see from the pages that follow, there are three main reasons why people are opposed to the changes to assessments, access and planning as currently outlined:

• Loss of support People are deeply, deeply afraid that the real motivation behind the introduction of such sweeping changes is a desire to cut costs. This fear has been fanned by continued references to increasing plan costs and scheme sustainability. Having fought hard to finally have the support they need to live an ordinary life, people are understandably anxious and angry about the prospect of it being taken away. Only a few short years into the life of this world-leading reform, attention has already turned to the way it needs to be trimmed and cut. Rationing was a defining feature previous state-based support systems. People fought hard for the NDIS to be different. They are beyond angry that they find themselves here again so soon.

2. Loss of individuality

One of the reasons people fought so hard for the NDIS was to be seen and treated as an individual. To receive funding and support that was tailored to their individual needs and circumstances. This automated process in which an unknown assessor will come up with unknown assessment score which will be fed into unknown computer in order to determine a plan and a budget on which their lives depend leaves people feeling that they are little more than numbers in a machine to be crunched and spat out. They do not have confidence that the assessment will accurately or comprehensively capture the complexity of their lives. And that, as a result, the funding which is calculated from it is unlikely to be sufficient. Coupled with the fact that goals will no longer impact how much support people will receive, leaves people feeling that their individuality and needs are being sacrificed in the name of cost-cutting and systems efficiency. And while they understand that on the other side of this there is the promise of greater flexibility in how funding can be used, they also know that no amount of flexibility in the world will help if there is insufficient funding to meet your basic needs, and your avenues for appeal have been deliberately limited.

People with disability and their families want the NDIS to be fair. They also want it to be consistent. But the government and the NDIA have provided no information, modelling or evidence for their claim that the introduction of compulsory assessments and accompanying changes to planning and funding will make things fairer and more consistent. In contrast the NDIA and the government have simply asserted that they will. Given the significant impact that these changes will have on the lives of people with disability, our community is gobsmacked and angry that these changes are being introduced without any evidence to demonstrate they will actually fix the problems we all want to see resolved.

Loss of certainty

People fought hard for a scheme that would see them as individuals and would give them the support they needed to do the things they wanted to do. But the NDIS was never just about increasing the number of people who received support or increasing the amount of support they received – as important as those goals were. It was also about giving people certainty in their lives. Reassurance that the scheme would be there when they needed it. No longer would people spend their lives wondering if the meagre support they relied upon would be taken away. No longer would they have to explain their story again and again in order to justify the support they need. Certainty was so important that it was captured in the “General Principles” in the NDIS Act. Principle 3 states “People with disability and their families and carers should have certainty that people with disability will receive the care and support they need over their lifetime.” The prospect of being regularly assessed in a brief and inappropriate way with the constant threat of eligibility being removed or losing vital support is a terrifying ghost from systems past. People thought those days were dead and buried – and they do not want them resurrected.

In short - people are concerned both with how the assessments will be carried out as well as how that information will be used to determine their NDIS plans and budgets. They do not believe their individual needs and circumstances will be accurately captured – and that therefore allocated funds are unlikely to be adequate. They do not understand why after years of stressing the importance of identifying goals and then tying the allocation of funding to them, why they have suddenly been abandoned. Not only do they not understand, they fundamentally oppose the loss of goals based planning – one of the foundational principles of the scheme and one of the reasons people fought so hard for its introduction. And while the consultation papers and communications provided by the NDIA focus on increased fairness and consistency, the speed at which the changes are being rolled out and the lack of evidence and evaluation of their impact demonstrates in a very clear way that a desire to cut costs is the real motivation for their introduction.

As you will see from the stories that follow, many people with disability and their families have been around for a long time and seen numerous government reforms come and go. Many also have extensive experience with other government systems such as Centrelink and employment support services. They have seen these kinds of assessments before. They understand that when governments attempt to “streamline” or automate systems people with disability rarely fare well – and, more often than not, a desire to cut support and costs is driving their introduction. The sudden announcement of these changes, the lack of transparency and real consultation about them, and their sweeping nature has only reinforced this belief.

**A last word …

People with disability, their families and carers as well as the organisations that support and represent them want the NDIS to work more than anyone. They fought for it and they believe in it, and they need it. What is striking in the comments and stories that follow is that while many are frustrated with the way the scheme currently operates, they continue to believe in its potential. But they are angry at the way they see this potential being squandered. Lost in unnecessarily complex and complicated processes, unclear and constantly changing rules, confusing information, inconsistency and inequity and a lack of understanding and responsiveness to the complexity of the lives of many people and their families.

But most of all lost because the voices of people with disability and their families are not being heard, listened to – and then acted on.

And what has been frustration for many years is now turning to anger. Anger that the demands of the system are overriding the needs of the people it is meant to serve.

The sudden nature of these announcements, the speed at which they are being introduced and the lack of consultation has eroded what confidence and trust there was in the scheme and those running it. Leaks to the media in recent weeks are revealing even bigger changes than those covered in the consultation papers has further damaged what little trust remains. Once lost, it is a slow and difficult task to rebuild. The damage has already been done.

So we want to finish with a plea. We want the NDIS to be fair. We want it to be consistent. But also want people to get the support they need – and are entitled to.

People with disability and their families do not think these changes will get us there. In fact they are pretty firm in their view that they will definitely make things worse.

They want the NDIA and the government to go back to the drawing board. They want them to begin again, to test different approaches. And then work with people with disability, their families and carers and the organisations that represent them to come up with a way to approach applying for the scheme and determining plans and budgets that will work for everyone.

Despite the promise of the NDIS and the rhetoric that has built up around it, people with disability and their families strongly feel they are not currently at the centre of the NDIS. In stark contrast, they feel the scheme is driven by the dictates of budgets, government ideology and bureaucracy rather than their own needs, experiences and ideas. They do not feel engaged with – just talked about, to and at. Announcements such as the ones made in recent months only confirm that view.“

But they want that picture to change. They believe it can. But only if they are true partners in what is to come next. So the last word must belong to them. Please stop. Start again. And talk to us about what will work.

Most common issues raised with EAC

Loss of individuality People with disability fought hard for a system that saw them as individuals. And put quite simply, they do not want to go back.

As the comments and stories that follow clearly show, people with disability and their families want and expect the NDIS to be fair and consistent. But they also want it to be individualised and respond to their unique needs and circumstances. And they don’t think they should have to choose between the two.

There is undoubtedly a challenge in running a fair and consistent system in a scheme with more than 400,000 individuals in it. Individuals with different needs, different disabilities, different life circumstances. People with disability and their families understand it is a challenge. But they also don’t think it is an unsurmountable one.

People are concerned about the loss of individualisation on two fronts. No two people in the scheme are the same. No two people with the same disability are the same. So people do not believe a one-off assessment with a stranger in a short space of time will accurately and completely capture who they are, or the impact their disability has on their daily life. They certainly don’t believe it will be “holistic”. They do not see how it could possibly capture the impact their disability – or multiple disabilities – has in different environments. Particularly given that for most participants the assessment will be carried out in the environment in which they are most comfortable – their home. This is usually (although not always) the place which is best set up to meet their needs. And is therefore unlikely to give a complete idea of all their support needs.

And because people do not believe the assessment can or will accurately capture all of the complexity of their lives and circumstances, they therefore find it unlikely that budget that will be built from it will be sufficient to meet their needs. Particularly when the budget will be calculated and allocated without a conversation with the participant and/or their family member. And certainly without any ability to identify important goals which would have a significant impact on funding needs – such as moving out of home or getting a job.

And while their primary concern is being left without support, people also object to the way they are being treated. Like a number rather than an individual. Stripped of their individuality, their goals and what they are trying to achieve, people are left feeling that it is the process that matters most - rather than the outcome. They fear it reinforces a view of them passive recipients of welfare rather than individuals worthy of support and investment. The drive for reform appears to be efficiency – rather than their needs. And worse than that, the constant references to bias and the alleged purchase of yachts is simply reinforcing negative public perceptions of people with disability – the very opposite of what the scheme should be doing to advance people’s rights, tackle discrimination and break down barriers to social and economic inclusion.

In short it is not the person-centred scheme they fought for and expect.

“The NDIS was designed to support the individual goals and aspirations of people with disabilities so that people can have great lives. NDIS planning was supposed to be about getting to know the participant and involving other people who know them well so that each plan is a custom-build for the individual.”

“There is no “one size fits all” acceptable alternative to individual NDIS assessments of people with autism. Every person should continue to be assessed for care support on the basis of their individual needs.“

“Every year, my sister faces extensive and intrusive assessments. From medical tests related to her disability, and standard tests required for NDIS funding related purposes. Subjecting her to yet another test for something a reasonable person should be able to gather from the existing evidence, seems unfair to her. She’s a person trying to live a life, not some guinea pig.”

EAC Submission to the JSC March 2021 - Submission          11

“I understand that officials who are in favour of this new system have used terms such as “sympathy bias” when describing reports by Participants’ treating health professionals. This simply highlights how little understanding and empathy they have for people with disabilities. I am concerned that such people are the decision-makers on this matter, as they stand for the interests of the purse-string holders rather than the Participants. Participants’ needs are always complex and many have extensive histories, which simply cannot be captured in a one-off assessment. It is not possible to use a “one-size fits all” approach when dealing with the myriad of disabilities and the subsequent implications in daily life that people experience. This assessment model should only be used if a person does not have access to health professionals who could provide a comprehensive assessment report, and not in lieu of this.“

“What makes the NDIS actually work for my son is the individualised planning which is critical in obtaining the supports that actually work for him. Having clinicians that also know him, have a full understanding of his conditions and history also provides a more holistic assessment, with relevant information to support the need for funding and support. Please do not change this system, extpert planners that know what they are doing is critical. Ticking boxes is a regression of the system not an improvement.”

“Please remember that we are all individuals with individual needs and individual amounts of funding to support these needs whether we are able bodied or disabled. No-one has the right to strip any person of their individuality. The consequences of this will only lead to the disabled being even more disadvantaged after the assessment than before. Parents and concerned individuals worked long and hard to have NDIS put in place with the hope that the situation for the disabled would be improved.”

“The NDIS was built on the premise that people with a disability would be treated as full individuals with the power to shape their own future. The current NDIS assessment proposal shifts that locus of control away from the person with disabilities, and their families, again. The reason for these assessments is to reduce complexity. The reality is that disability is complex. People cannot be standardised and categorised for convenience sake.”\n\n“When this scheme began it was focused on the vision and goals of participants it had a assets-based approach. Namely, that it saw value in people with disabilities. It was aligned with the outcomes from the International Convention on the Rights of People with Disability. But very quickly it adopted the ‘deficit’ based model of social services. This latest move to have Independent Assessment is just one more move towards devaluing people with disability.”\n\nAs someone with neurological issues, it would be inappropriate to use the same assessment as for an amputee or someone with mental health disability or intellectual disability. I hope this will be considered. Consistency is not necessarily synonymous with fairness.\n\n“> “This is a limiting and undeniably de-humanising process which will see those in real need fall by the wayside. The whole reason NDIS was created was to meet individuals’ need and planning accordingly to meet their specific goals - not a generalised tick- a-box plan. The NDIA needs to put people first. Put individuals first.”

“The NDIS has been working well for my son. For the first time in over 30 years he is having a ‘good life’ because he has been assessed for what he needs to have a good life based on who he is and not what someone else decides for him. We all need to be seen for who we are as individuals. Please do not change individualised assessment.’

My brother is 30 years old. He will not engage with people unknown to him. It has taken his team of specialists/therapists/allied health many months to engage with him. He will tell you he can do everything. However, he can’t- his has Down syndrome and needs assistance with most daily tasks. His personal affairs such as banking is completed by our parents. Shopping & cooking is done with a support worker present. The independent assessors will not get or understand the full level of support he needs to function and to complete his daily living tasks. My brother is not a tick the box answer. HE IS AN INDIVIDUAL HUMAN WHO DESERVES TO LIVE THE LIFE HE CHOOSES.

“He is an individual, and a generalised generic plan will be totally unsatisfactory to ensure his needs are met. Please consider the individuals who are assisted by NDIA, a generic assessment is an absurd idea quite contrary to the original promise of NDIS.”

“When the NDIS was first introduced, it was proudly stated that it would be an individualised system which would be different and meet the different needs for each and every participant. This new change will be a big step backwards to the old system. The system that doesn’t work, don’t look at an individual and what they require or want for their own lives. A system that just counts $$ and ticks boxes!”

14 EAC Submission to the JSC March 2021 - Submission

“My son was the recipient of an independent assessment. It was a waste of time. The standardised tools used during the evaluation were inappropriate to his diagnosis. The assessor used terms which were offensive to me, and she showed not one whit of interest in my son as a person. It was demeaning, degrading and unnecessary. Take these foolish concepts of independent assessments away, and listen to the participants who use the NDIS. This is scheme is for us, not for politicians to carve up and change and butcher it as they see fit. NO to Independent Assessments!!”

“I am extremely disappointed and heartbroken that the NDIS we fought for and helped design is slowly being eroded by changes and a sematic failure by disability organisation’s to allow choice. I am angry to see the old tick the box system return. Why is it returning? Because it’s easier and more streamlined for everyone else, except families living with disability. This is a return to a system that failed us for decades. We are not our diagnosis nor the sum of a functionality. We are individuals who like every other citizen has a personality, passion and interests. These cannot be taken into account by boxes. I have spent my whole life explaining why I don’t fit the box.”

“What we need is qualified assessors who understand that all people are different and it’s not one size fits all. Assessments should start with meeting the client’s needs, wants and aspirations.”

“One of the major strengths of the NDIS is its capacity to allow for individualisation of supports to meet needs. Without this, one of the major underpinning principles is effectively removed.“

Loss of funding

As stories on following pages show, many people are angry and deeply suspicious about the motivation for these sweeping changes. People are worried and angry that the changes are being “sold” as moves to improve fairness and consistency, when the desire to restrict eligibility, reduce plan sizes and limit scheme costs is the real driving force behind their introduction. Continued references to scheme sustainability in NDIA’s corporate documents and in public commentary by the government has only reinforced this view. People are deeply angry that these reforms are cost cutting by stealth.

People with disability and their families want the scheme to be sustainable. They have the strongest interest in the scheme being around in years to come. They want government and public support for this remarkable reform to continue. They want the scheme managed well so it is there for them when they need it. But they also want people to receive reasonable and necessary supports to meet their needs and achieve their goals. And they want to have an honest conversation about how to achieve those twin goals.

The suspicion that these changes are a trojan horse for cost cutting measures is also fuelled by the limited information in the NDIA’s consultation papers and on the NDIS website about how assessment results will be used to calculate individual plans and budgets. People don’t understand how the complexity of their lives can be reduced to an algorithm. And the lack of the information provided about how the process will actually work has done little to alleviate people’s concerns. As a number of people note, there is little information in the public domain about how the NDIA arrive at plans and budgets at the moment. There is, for example, very limited information about how the NDIA currently determines and then uses Typical Support Packages (TSPs) to determine participant plans. This leaves people with little to no confidence that the NDIA will share information about how plans and budgets will be determined in the future.

People with experience of previous state-based support systems are all too familiar with rationing. It is again one of the reasons they fought so hard for the NDIS. They do not want to go back. And people receiving support for the first time do not want to go back either. People are beyond angry that rationing appears to have begun so early in the life of the scheme – begun in fact before transition is even complete. The promise of the NDIS was that it would move beyond short term thinking and the lastest budget cycle. The fact that this has been abandoned so soon into the life of the scheme has left people questioning the government’s commitment to the investment approach the vision of the scheme demanded. And whether the scheme is just now simply viewed as yet another welfare program – rather than the social insurance scheme people with disability and their families fought for.

The certainty that the NDIS was intended to provide has now been undermined, even before these reforms are introduced. People are anxious and fearful that these regular, compulsory assessments will put their eligibility or their support at risk each time. This anxiety has been compounded by the revelation that a refusal to take part in an assessment will jeopardise their funding and even their eligibility for the scheme. Refusal to take part appears to leave people in a legal “no mans land” where a final decision on their eligibility or their funding will be unable to be made. In fact it appears they will be regarded as “withdrawing” from the scheme – when they will have done no such thing and may in fact be desperate for support. The knowledge that they will “have” to participate or risk loss of support has left many anxious and traumatised – even before the changes are introduced.

Again, many despair that this is where they have found themselves so soon after the scheme began. To be worried about the future again just a few short years into the scheme’s roll out has left people questioning if the fight for adequate support will ever really be over – and whether they ever will really be certain about the future again. And this is evident in many comments – but particularly in the comments from aging parents who are now anxious and concerned that the future of their adult children is now in jeopardy just when they thought they might finally be safe and secure.

It seems that the main reason these assessments are being introduced - is to substantially reduce the overall cost of the scheme – not to better meet the needs of people with a disability … The end result will be like the government’s Robodebt scheme - and will make the lives of many people with a disability, a similar living hell, where the supports that gave respite to their carers and meaning to their lives - are ripped out from underneath them, by a private organisation governed by funding limits, a bottom line of profit greed, and determined by unqualified people, with no clear idea of how to meet those needs, because they do not have the professional evidence, and even if they did, have no time given to read and fairly evaluate it. Years down the track it will take a royal commission to undo the damage caused and to make restitution to all the people whose lives have been destroyed by this inhuman process.

“These independent assessments are designed to reduce funding and or remove people from the NDIS because looking after disabled people is too expensive and apparently getting the country into surplus is more of a priority that looking after disabled people.”

“Independent assessments are a bureaucratic response to a complex issue - understanding and supporting complex, nuanced human beings. It’s a cynical and appalling attempt to grab money back from the people in our society who need it most. Investing in people was the whole point of the NDIS.”

“My son’s needs and his particular disability will not change much in the future. So, getting potentially re-assessed is a stress that we do not need. I feel that the only reason my son would be targeted for a reassessment would be to try and reduce his adequate funding.”

“How can such an assessment done by a stranger in a few hours be the deciding factor in how a participant is funded. It is inconceivable that the NDIA give such weight to these assessments over the participants experts, such as doctors and families, to make such a crucial decision for that person… There is a significant risk to my daughter and other participants that these assessments will result in a reduction of required support … I am begging for my daughter’s life once again, and implore anyone who can assist to make sure that assessments are not the core factor in determining a participants individual plans and funding.”

“When the NDIS was started it was explicitly promised to people with a disability that they would not be required to keep having assessments, that once they were accepted into the NDIS, there would be no more assessments required. This was one of the ways the NDIS would improve on existing disability services. This is a breach of faith with that promise.

My son was accepted into the NDIS because he has a severe, life-long disability with no prospect of improvement. There is absolutely nothing to be gained by inflicting on him the trauma of further assessments that will say exactly the same thing. I cannot understand why people like my son should be forced into another assessment, a process that will make him extremely anxious and upset, particularly when the NDIS Act made it clear that there would not be ongoing assessments.“

“His disability is permanent and will not change over time. To have to prove to the NDIS every year or so, that he has a disability, is downright stupid, degrading and distressing to him and his parents, not to mention a great waste of NDIA resources. Surely, some provision could be made for people with permanent disabilities to be excluded from these assessments and create some certainty for their futures.”

“I fear that the ones most in need, will be the ones to be “pruned down” to the bones. These NDIS assessments are not a service measure, they are a cost cutting measure.“

“What’s wrong with the full functional assessments I have done every year by NDIS registered neuro physiotherapists. It’s a blatant attempt to provide cookie cut funding and save money. Some of the tools to be used aren’t even meant to be used this way, or are out of date! And all without context. It’s got nothing to do with equity or fairness.”

No one is buying yachts with their funding. All I want is for my child to live a safe and happy life, being able to communicate and socialize with his peers. to be able to participate in his community.

Disability is Complex

The NDIS was introduced to support people with a disability or multiple disabilities that have a significant impact on their daily life. It follows then that the people in the scheme are complex. Their disability, their circumstances, their lives are not easily simplified.

People simply do not believe it is possible that a short sharp assessment at a single moment in time will accurately capture the complexity in their lives. Many have dealt with medical and allied health professionals over long periods of time. They know how long it takes to build understanding and a comprehensive picture of need and circumstance. And many have been on the end of professionals who have got it wrong before. So they don’t believe that someone they have never met before asking simplified questions in a short period of time can capture the complexity of their lives.

And while this was true of many people who responded, it was a particular concern for people who had a rare or complex disability. Many spoke of the prior struggles they had in finding treating professionals who had the experience and skills to work with them. They therefore cannot see how contracted assessors would possess the necessary skills, experienc eor training to accurate assess their disability and needs.

Many people noted that part of the complexity in their lives was due to variability. Different days, different circumstances, different environments, different health all have an impact on their day-to-day needs. For some, it is the difference between a good day and a bad day. For others it is a much more complex interaction of a much larger number of factors. Regardless of the cause, most people expressed concern that a single point in 时间 assessment would not and could not accurately capture the variability in their lives.

And given that they do not believe the assessment will be accurate, it follows that they have little confidence that the funding allocated on the basis of it will be adequate.

Many are frustrated by the reference to the assessment as “holistic”. To them, holistic means a comprehensive analysis done over time by multiple professionals, using tools designed for the purpose. They understand that is not what is being proposed.

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Some people are already familiar with the tools which have been selected for use. They have completed some assessments to establish eligibility or during previous planning meetings. Others have undergone assessments in the past. They therefore understand that the tools often include questions that require simple answers such a yes, no or sometimes. But they also know that despite their apparent simplicity, these questions are sometimes difficult to answer. A complete answer may be depend on context or circumstances. People are therefore concerned that in the race for simplicity, context and nuance will be lost. Or even if it is acknowledged, that assessors will not know how to spot it or tease it out further. And even if they do, it is not clear if or how this additional information will be recorded. And if it is recorded, how it will factor in calculations for a plan or a budget. Again, if the assessment is not accurate then the funding that follows is unlikely to be either.

And while for most people their focus is clearly on the outcome – the accuracy of the assessment and adequacy of allocated funding – many people also chose to comment on how they believe participation in the assessments will make them feel. Like a number not an individual. Squished and shaped and moulded to fit into a box - rather than a unique individual in all their richness and complexity. And most important of all, potential.

Again, this is not the person-centred NDIS they want and expect to see.

“The best way to accurately meet the needs of individual NDIS\nparticipants is with the reports and recommendations of the\nprofessionals who know and work with these individuals. No matter\nThe background of the assessor, it is simply not possible that they will\nhave all the training and skills to replace a team of allied health and\nhealth professionals. This is obvious and irrefutable. It is unreasonable\nto ask one assessor to do the job of many professionals, and to do it\nin one encounter with the participant, whose needs and ability may\bbe inconsistent and regressive from day to day.”

“How can a single nameless, faceless assessor possibly make an accurate assessment of the needs of such a complex individual? It is impossible for any one person to have a detailed knowledge of every kind of disability, the impact that this may (or may not) have on any individual, the health issues associated with a certain condition and the impact they have on everyday life, and the knowledge, training and skills required of staff who support such an individual? What one person can know the challenges and barriers to a good life - the physical, emotional, neurological, speech needs etc and the associated professional support, equipment, and technology that can alleviate or remove these challenges?”

“We do not fit into neat boxes. The role of the individual assessment for NDIS is to find out what matters about that person, living that life and not just to tick box your way to a one size fits all answer. People are not served by ticking boxes about them.”

“The reason for these assessments is to reduce complexity. The reality is that disability is complex. People cannot be standardised and categorised for convenience sake.”

“You’re dealing with people who are complicated, already vulnerable and already disadvantaged. A once-off assessor is not going to be able to get all that background when it takes my clinicians almost a year to be truly effective.”

“We were part of the trial assessment process recently for our son, a young adult who is non-verbal. The assessor freely admitted she knew nothing about speech therapy or his PODD communication book. She briefly watched some of his morning routine which needs prompting by us. At no stage did she leave her spot at the table in front of her computer to get a better idea of his abilities. After he left with his support worker, we had to go through the assessments. It was like the days before the NDIS with a lot of emphasis on what my son cannot do. I was depressed for several days afterwards. We feel this type of process takes away the idea of people with disability being individuals with a wide range of needs, interests and dreams.”

“No one individual could provide the expertise across our daughter’s complexities - that is a nonsense. Inevitably numerous reports from specialists in the field would need to be obtained - which is what is happening currently utilising those specialists who have years of experience with our daughter’s complex changing conditions.”

“As a health practitioner myself, I can tell you that I personally would feel uncomfortable about making a full and accurate assessment of a person’s needs after just one or two meetings.”

“I have services in place now, structure and plans to expand on the things I’d like to participate in. I can’t do that if my budget is reduced based on ambiguous questions, tick boxes or my physical presentation.”

“Our Grandson has Autism 3, is non verbal and has many complex issues. He is 17, nearly 6’ tall and 95KG. Over the past few years the NDIS has paid for many specialist reports. They have all confirmed his many behaviour problems and sensory problems. How can an independent assessor who may see him for a few hours make a decision on his diagnosis and his NDIS needs? It is just not possible to asses him in that time. He could well be having a good day and watching his iPad or we could turn it off and they would then be at risk for their safety. He can escalate in a matter of seconds to out of control and aggressive and self-harming or, go for days with few problems. So how on earth does someone who does not know him make an assessment? A lot of taxpayer’s money has been spent to diagnose and manage his behaviour. It’s very clear what his diagnosis and needs are, so why would you need to spend more taxpayer’s money on yet another assessment?”

“An Independent assessment carried out by an NDIS appointed person that will only spend a few minutes with him will not be able to assess my son’s full needs or have time to complete a list of his life complex threatening set of disabilities, this can take a few months at minimum and only with daily/hourly contact. Unless your assessors intend to move into our house and care for our son full time and work with his team of qualified disability & medical supports for a minimum of 12 weeks it is utterly impossible to understand or determine his future & current needs.”

“I do not fit into a neat little box due to the complexities of my disorder. Standardising assessments will cause many people to suffer including myself. Not all of us fit neatly into a box.”

“These assessments will just be a ‘judgement on the day’ by someone who has no idea about our son’s ‘real life’ struggles and needs…the assessor will NOT KNOW what life is truly like, so these assessments would not be a true indication.”

“I am deeply concerned I will be questioned about the ‘onset’ of my disability, pressured to rely on free ‘support’ from family and community (who are active perpetrators), and will be forced to sit through a ‘slice and dice session’ where I am asked irrelevant questions that do not touch on the severity nor complexity of my daily experience in order to mash me into check boxes for funding that have nothing to do with my lifelong disability.”

“There is often no context to questions in these assessment, sometimes the questions are not answerable and sometimes the assessor does NOT write enough notes to further explain INDIVIDUAL circumstances. I have no issue with having to accurately determine functional capacity to ensure adequate funding is obtained, however relying on a “standardized” assessment to give you an “individualized” picture of funding requirements is problematic to say the least. I just don’t see how this can work.”

26 EAC Submission to the JSC March 2021 - Submission

Loss of expertise from trusted professionals

People with disability and their families understand that the NDIS cannot make decisions in a vacuum. They understand that planners and delegates need good, clear, accurate information to inform their decisions. In fact, many express frustration that the reports and evidence they provide during planning meetings often appears to go unread or does not seem to be taken into account when determining plans and budgets. This particularly frustrating given the considerable time and money invested in preparing them. People want their plans to be built on good solid evidence and information. And they are happy to provide it. They just believe their existing health professionals are in the best position and have the experience and expertise to provide it.

Many people noted that it was a waste of time and resources to pay assessors to carry out assessments if evidence was already available. Money that would be better spent elsewhere in the system, particularly on assisting people with disability. Many also suggested that if the NDIS insisted on standardised information and testing, they would be willing to carry out these assessments with their own treating professionals. They felt this would not only allow them to feel more comfortable during the assessment but, more importantly, increase the accuracy of the information provided.

And finally, a number of respondents expressed frustration that their treating professionals were being accused of bias. The suggestion that participants were gaming the system by colluding with their own professionals was deeply offensive to many. They noted that the claims of bias were made without evidence. And the claims only reinforced the view that the government and the NDIA were starting from a place of mistrust of people with disability and their families.

“Isn’t assessments made by medical professionals that have had years of contact and close association with my daughter better than a one-off time constrained assessment that views my daughter in one point in time?”

EAC Submission to the JSC March 2021 - Submission 27

“Both of my children have complex needs that require particularly skilled practitioners to understand. We have been working with the same team for years now, building relationships and understanding as we work together for a common goal, that my children will one day be independent, engaged with their communities and happy. The idea that a random practitioner would be able to make an accurate assessment that takes into account their ability to function in a variety of environments is ludicrous.”

“Particularly concerning is the inability to provide detailed reports which would come from his existing allied health team (some of whom have worked with my son for almost 4 years).”

“My child with a disability will not get an accurate assessment as he is not comfortable with strangers and it has taken many years to get him to be himself with his therapists. Accurate and true assessments can only be conducted by people who have a history with the PWD.”

“If Compulsory Assessment is introduced and it is decided for me what support I require before any critical input by me, my doctors and Allied Health professionals and other important parties, then we lose the ability to have the quality of life others take for granted and our multilayered, complex needs will not be considered.”

“My needs are high but some days I function far better than on other days. My own treating professionals know this and plan for me appropriately.”

“It must be understood that many people with disabilities lack the personal resources required to present comprehensive medical/functional histories and/or appeal decisions. Unlike my daughter, most do not have health professionals as parents/carers, who can navigate the bureaucratic web that is the health/disability sector and advocate for them. They rely on their trusted treating health professionals to speak on their behalf. This is usually in the form of reports that represent their individual situation.”

“The idea of total strangers turning up with an assessment tool to make decisions about my capacity seems shocking — I should have a choice of which health care provider may assess my needs and that should be someone that I know and trust. I’m horrified by the lack of dignity and respect that this policy implies and will afford me should I be subjected to it.”

“These compulsory independent assessments is an insult to the taxpayer who have contributed to the NDIS funding that has paid for the experts time in assessing and reporting on my son’s needs. Why should we ask tax payers to pay yet another bill for something that already exists in the current system?”

“It is unreasonable for the NDIA to subject my daughter and other participants to ongoing lifetime assessments in order to access funding that has already been determined as reasonable and necessary. The current planning process already includes assessments and reports by her experts. Her disability won’t fundamentally change.”

EAC Submission to the JSC March 2021 - Submission 29

“The cost of these assessments is to be taken from the NDIA budget. It is disappointing that such costs will be used to provide these unnecessary assessments when the funds could be far better directed to meet the needs of people with disabilities who are struggling without adequate supports.”

“Every dollar spent on this program would be used far more effective in actually improving and increasing the actual funds allocated to people with a disability and to improve the NDIS system.”

I am a psychosocial recovery coach supporting 7 participants who live with complex treatment resistant schizophrenia. These people live with extreme paranoia and delusions that the government is out to get them, already. It was a feat to support these people to apply for the NDIS initially due to this paranoia and the stigma they have faced for their whole lives, living with schizophrenia. These participants are finally accessing the community, are supported to build their capacity to feel more included in their community, and finally feel that they have a right to be a part of it. These individual assessments for this cohort is extremely dangerous and terrifying for them. I fear that these participants will choose to leave the NDIS rather than participate in the assessment process. This will be of detriment to the participant, placing them back in the cycle of inconsistent community services and put pressure on community mental health and mental health units.

“I have autism. Autism is very complex. At home in my own environment I am ok. Outside it is another thing. Having an independent assessment who does not know me will not be a true assessment. My specialists know all my difficulties.”

“I need people to guess words and play an active role in communicating with me. An important part of this is also making sure that I am not being misrepresented, or denied the opportunity to speak. Most of the time communication is very difficult with people who don’t know me, and many people aren’t willing to give me the time I need to be understood. There is an even greater impact when that person is in a position of authority, such as in a medical setting, or when someone can make decisions that affect my life. The consequences of this is something that I have experienced countless times, resulting in me not getting the support I need to live a life.”\n\n“As an Occupational Therapist, who is bound by a code of ethics as part of their registration, it is absolutely abhorrent to be accused of ‘sympathy bias’. Occupational Therapists have been requesting clearer guidelines on functional assessment report content that is required by NDIS to facilitate fairer assessments of funding for participants. Have they received this? No. So when each OT does their own report to the best of their ability using a format they think best represents the factual information and recommendations to be made, they are criticised for getting it wrong??? How is this fair?”

The NDIA selected a forensic psychiatrist to do a standard assessment of my mental health to argue against funding. This so called independent psych spent 4 hours grilling me and wrote a 20 page report nay-saying everything that had been shared from my clinical and non clinical supports. The professionals I’ve been working with for 6-12 years, and suddenly she knows better after 4 hours on zoom?

EAC Submission to the JSC March 2021 - Submission 31

Dealing with Strangers

Most people in their stories and comments focused on the difficultly in capturing complexity in a short period of time. For some, part of that complexity was the varying capacity of people to take part in the assessments.

Some people expressed concern that in a short period of time they (or their family member) would “mask” the impact of their disability. For some masking is a deliberate act, practiced over many years in order to survive. For others masking is more complex, born of a desire to please and anxiety to do whatever helps you “fit in.” Regardless of cause, masking would mean the assessment was unlikely to be an accurate reflection of the true impact of disability or need for support.

In contrast, others expressed concern that far from masking, they or their family member would be unable to answer questions posed by a stranger and would just shut down. Yet others noted that due to intellectual disability or cognitive impairment, their family member would simply be unable to answer the questions accurately or meaningfully. Some expressed concern that inexperienced or untrained assessors would be unable to spot when people did not understand what they were being asked or when they were unintentionally providing inaccurate information.

Many people noted that the assessment would only be accurate if people felt safe and had built a trusted relationship with the person conducting the assessment. While they felt this was true for many people with a disability, they noted it was a particular issue for people from a Culturally or Linguistically Diverse background or people from an Aboriginal or Torres Strait Islander background. People’s prior experience with other government schemes and the limited information in the paper about the specific expertise assessors would have and the training they would receive to respectfully engage with particular groups left people with little confidence these important issues would be addressed.

A small number of respondents noted that for them or their family member, interacting with strangers would be damaging and traumatic. For some people that will be evident from the beginning – and perhaps these are the very people who will be granted an exemption. But for others the impact may only become evident as the assessment progresses - or perhaps even only after it has concluded. The consultation papers did not outline how this would be managed or what support would be provided. Parents in particular expressed concern that they would be left alone to manage the immediate after effects as well as the longer term impacts. People also noted that the people most likely to be negatively affected by assessments were also the least likely to request support or an exemption.

• Many people are concerned that the NDIA has not given sufficient thought as to how people’s rights can be protected, and how their safety can be guaranteed during these assessments. For example, the NDIA and the NDIS Quality and Safeguards Commission revealed recently at Senate Estimates that they were not sure who was responsible for the oversight of Quality and Safeguards issues during the current pilot. This leaves people with little confidence that these issues will be resolved when these assessments are rolled out for everyone.

• Finally, a number of people noted that while the assessment for them would not be traumatic, nor could it be seen as a positive experience. Being asked to “perform” tasks, having a partner or child validate your answers, being “judged” and “scored” in order to receive much needed support was viewed as irritating at best, humiliating at worst. People with disability and their families understand that the provision of funding cannot be without process. But they rightly question how many hoops and how many humiliating procedures they must subject themselves to in order to get the support to which they are entitled.

“My sister has a history of trauma, and the idea of having a stranger come to her home produces significant amounts of anxiety.”

“There are some, including my son, who will be unable to participate in questioning for an independent assessment due to their condition, such as cognitive problems. My son is housebound and mostly bedbound with no ability to generate energy. He cannot readily read nor write. He cannot advocate for himself, he will be confused and give incorrect answers if placed under stress of questioning. His sleep disturbance means he may not even be able to be awake when required to participate! How is he supposed to represent himself? How can I feel secure that he will not be removed from the scheme?”

“My daughter is autistic and masks very well when asked questions. Only through therapy can we get to the bottom of what is really happening. She would fool a one-time assessor and our vital funding would be cut.”

“>

“My sons in particular will be worse off through this process. Part of their disability is the inability to cope with social situations and placing stress on them unnecessarily (meeting someone new, being asked invasive and negative questions, making them focus on their deficits, asking them to evaluate their disability and quality of life…things they are unable to do) will cause unnecessary pain and discomfort for them. For one of my sons it has the potential to reverse the hard work we (family and health professionals and support workers) have done to build his self-worth and self-esteem and send him back into a negative, depressive spiral.”

“>

“My fear surrounding the proposed compulsory assessments revolves around an assessor that is not familiar with my history. Someone who has no idea on what it’s like for me on my really bad days. Judging me on my appearance or level of ‘functionality’ and potentially reducing my NDIS annual budget.”

“>

“My daughter will not discuss personal issues with anyone who she meets for the first time. A rapport needs to develop over time, if a rapport is not developed my daughter will not communicate.”

“I have two daughters who are both Autistic. I am concerned with the NDIS assessments. Both of my daughters find it extremely uncomfortable to get to know new people, especially ones who are going to meet them just once for an assessment. This will not make sense to them. They won’t like this happening. These uncomfortable feeling usually turn into a big meltdown that can last a long time and then take days to recover from.”

“> “>“NDIS Assessments will not work in the very remote Indigenous “>communities that I work in because traditional Aboriginal people will “>not be comfortable or feel safe talking to people they don’t know about “>their disability related issues. The time limit on the assessment process “>will not allow time for trusting relationships to be built so that people “>with disability can disclose their limitations & concerns. This will result “>in people not being able to access the Scheme or being funded “>inadequately to address their needs.”

“> “>The process will retraumatise me and if I go through with it, I have “>no doubt I will be left with next to no funding.

“> “>Masking” is how I protect myself when I am in a fraught situation. I might

sit there telling the unfamiliar psychologist loads of cods-wallop about how perfectly fine and normal I am.

“It guts the ability to make participant centred assessments where we are comfortable to show our vulnerabilities and be treated respectfully.”

“I work in allied health so am in the unusual position of being both a participant and a provider. My clients have cognitive and communication disorders, often involving difficulty comprehending things and expressing themselves clearly. I am really very, very concerned that they will be answering questions that they do not fully understand and will be unaware of the way their responses may affect their funding.”

“You are not safe for me. Your Independent Assessments will NEVER be safe for me. …No one person in my treating team (GP, rheumatologist, audiologist, physiotherapist, psychologist, psychiatrist, occupational therapist) knows the full extent of my care needs. They each hold a piece of the puzzle. It is not safe for one person to hold all the cards.”

“It has taken me 10 long years to build a team who understand the complexities of a family with three children with Level 3 autism and the behaviours that have accompanied this. The pain of retelling our story to each stranger brings with it a trauma so deep I end up minimising the story to make the pain go away.”

Additional informants

A number of people expressed concern that many of the assessment tools rely on someone else other than the participant to provide critical information. For some adults with disability, it is unnecessary and inappropriate for someone else to give information. They are able to speak for themselves. For these adults, the questioning of spouses, partners or children appears to be a humiliating “check-up” on the validity and accuracy of their answers.

For other participants there may be no-one in their lives who can give reliable, accurate or perhaps most importantly, independent information. There was limited information in the papers about how this would be managed – or what the outcome would be.

I was part of the trial. I found the process stressful and exhausting. The person who interviewed me was inexperienced. I was the fifth person he had interviewed. The questions were formulaic. I had to answer according to a prescribed set of answers. Additional information and related responses were not included. This process went on for almost 3 hours. Each person who has an NDIS package is unique and thus do not fit easily into the rigid structures of this assessment. A support person was also instructed to be at the interview. They were privately interviewed, a number of questions were offensive. I object to being questioned on my level of behavioural actions.

My main concern re independent assessments is the mammoth cost to the taxpayer for what purpose. It seems to be adding another layer of bureaucracy to the system. There are some people like my son who has a profound intellectual disability, is non- verbal, has a major hearing loss, dysphagia and some behavioural issues at times. It is obvious that he requires full support and assistance in every single aspect of his life. How is an independent assessment going to assist him in his plan? Any information re my son will come from me as he cannot participate in testing or answer questions. Once again families and participants are being putting under pressure to participate or provide evidence of what is blatantly obvious.

Lack of review and appeal

Some people expressed anger that they would not have access to the full assessment report unless they requested it. Given its importance and the role it would play in determining funding, they felt it was only fair and reasonable that it should be made freely available. They also objected in principle to the NDIA retaining information about them which was not also provided to them. The fact that the report would not be routinely provided also undermined confidence in the transparency of the whole process and increased suspicion that motives other than fairness and consistency were the driving force behind the changes. Every Australian Counts has been contacted by people who have taken part in the pilot who have been unable to access their reports.

Many people also expressed frustration and concern that the assessment report itself would not be subject to appeal. They were very concerned that an incorrect or inaccurate report could not be challenged and would continue to determine the provision of funding. Given the lack of confidence in the skills and abilities of assessors people were frustrated at the prospect of inaccurate and incorrect assessments remaining unchallenged and unchanged.

This concern was compounded by the revelation in the consultation papers that draft plans and budgets would only be varied in a limited set of circumstances. The papers list two sets of circumstances when draft plans will be varied– where the participant has complex needs that have not been captured in the assessment or where high cost items such as high cost Assistive Technology or Specialist Disability Accommodation would need to be added later. For the majority of participants, the draft plan will therefore remain unchanged. Again this means if the assessment is inaccurate or incorrect the plan may be incorrect - but the planning meeting will not provide an opportunity to correct it. This means an important check in the process has now been completely removed.

A smaller number of respondents also expressed concern about retaining rights to review and appeal. Despite statements in the consultation paper indicating participants would retain the ability to request a review or appeal, some expressed concern about the basis for reviews in the future. If assessments were not reviewable, and the way that the assessment was used in determining funding was not transparent, then on what basis could a participant seek a review? On what basis will people be able to submit a request for review to the AAT? How will they know what has and has not been included in their plan and budget? How will they know what to ask the AAT to review? Again a small number expressed concern that the changes were part of a broader push to reduce the right or ability of people to go to the Administrative Appeal Tribunal to challenge decisions made by the NDIA.

“I am very concerned that the Independent Assessment itself is not reviewable”. If this forms the basis for a decision and the assessment does not accurately reflect your function (as your function changes minute by minute due to the nature of your disability) then it cannot possible reflect your funding needs.

“We need assurance the Assessors are not there merely to restrict or deny financial assistance, needed supports to those they consider not eligible, therefore the right to appeal must be preserved.”

“Why can’t we dispute this assessment? You could get an assessor who’s having a bit of a day and dumps your funding and that’s it?”

“He should have the right to appeal the independent assessment & be able to say what he needs to assist him with achieving his life goals.”

“With my communication and support needs, having to base my funding on a short standardised assessment with someone who doesn’t know me, whose decision I can’t appeal, is such a dangerous proposal. 3 hours is too long for me to be grilled for and not long enough for my way of communicating to get across about me. There is too much potential for things to go wrong and people’s lives will be seriously impacted by these decisions.”

EAC Submission to the JSC March 2021 - Submission 39

A question of independence

Many people expressed frustration at the portrayal of the assessors as “independent”. Given they would be contracted by the NDIA, many questioned exactly how independent they would or could be. Far from independent, many noted that there was an inherent conflict of interest in their role. They noted that the detail of the contracts, including KPIs or financial incentives, would not be known to participants or their families. However “arms length” the contracted organisations were purported to be, the fact that they were paid and managed by the NDIA and would be subject to their directives meant for them they were not independent at all.

Many people also questioned the experience and expertise of assessors. They questioned whether experienced allied health professionals would be willing to carry out such assessments when better paid and more challenging or interesting work was readily available. Given the shortage of allied health professionals in many areas, they questioned who would be attracted take up such positions and expressed concerned that contracted organisations would only attract relatively inexperienced staff – or would in fact seek them out in order to contain costs.

Again, many expressed concern that assessors were unlikely to have the experience and expertise in all disability types or in particular types of disability. People with rare or complex disability were particularly concerned that assessors would not possess the necessary skills or experience and would struggle to carry out the assessment or accurately capture their needs. And given that contracted organisations would need to manage the cost of conducting assessments, people questioned whether the organisation would invest in skilled and experienced individuals or in the training necessary for them to complete their task accurately and effectively.

A small number of respondents noted that the planned changes departed from the recommendations of the Tune Review. In particular Mr Tune recommended that the NDIA “should not implement a closed or deliberatively limited panel of providers to undertake functional capacity assessments”. Yet this is the approach the NDIA have decided to take.

Many of the people who responded acknowledge that the current planning process is less than ideal. Many are frustrated the apparent lack of relevant experience, expertise and training of many Local Area Coordinators. This reinforces their view that contracted assessors are unlikely to be much better.

“A random person with a vested interest in keeping the NDIS below budget, is simply not going to have the background or scope of knowledge required to understand the wicked problem we have with my sister’s care and management.”

“By using assessors who do not have a professional qualification and only training through an entity that receives funding and potentially with KPI that is set to reduce the number of people accessing the system is likely to have a negative outcome for people with conditions that need support.”

“This should not be a tick and flick exercise, and the final say should not be handed over to an unelected, unaccountable, for-profit organisation, whose sole purpose is to return a profit to shareholders.”

“Having NDIA-appointed assessors unfamiliar with one’s history and challenges can result in suboptimal assessment and a lot of stress which can lead to lowered functioning. It also seems to present a conflict of interest. I question how truly independent those assessments would be.”

EAC Submission to the JSC March 2021 - Summary 41

“These so called ‘independent assessments’ are no more independent than the system as it is now. Why? Because the assessors will be contracted to the NDIS to do the work and will be easily influenced by the needs and wants of the NDIS.”

“There is no such thing as an independent assessment, the organisation that pays for the assessments sets the tone, modus operandi and outcomes of the assessments.”

“Allied health professionals and doctors chosen by NDIA cannot conduct an independent assessments - they are chosen and their fees are paid by the NDIS. There is an obvious conflict of interest. They are NOT independent.”

“A third-party assessment paid for by the NDIS is beholden to the NDIS and will not deliver an independent and unbiased report…. These new NDIS assessments are not required and divert much-needed funds to unnecessary procedures which only seek to tick boxes.”

The importance of goals

Since the beginning of the scheme, the NDIA has stressed the importance of tying the use of NDIS funding to goals set by participants. NDIS information, resources and training have all focused on the need for participants to demonstrate how funding used is linked to goals and outcomes. The planning process itself has focused on setting goals and providing evidence on progress towards achieving them.

People are therefore completely mystified as to why the NDIA have apparently done a swift backflip and decided that plans and budgets will now be set without reference to goals. While goals have not been completely abandoned, the consultation paper makes clear they will be relevant only in shaping how already allocated funds will be spent – not in determining the allocation in the first place.

Put frankly, this does not make sense to people. For many people what they want to do, what goal they are trying to achieve, does have an impact on funding. The two most obvious examples of such a goal is the desire to move out of home or get a job. For many participants in the scheme these critical goals will not be achieved without the provision of additional funding. It is not evident from material presented in consultation papers how important goals will be captured and assessed during the formal assessment – or indeed if they will be at all. And is therefore unclear if and how they will impact the amount of funding allocated.

Many people also see the loss of goals as undermining the original intent of the NDIS and a return to a rationed “work with what you have been given” approach. Again this was one the of reasons people fought so hard for the introduction of the NDIS – and they are angry that they have found themselves here again so soon.

“What needs to be included in the decision process is ensuring goals are still included.”

“20-30 minutes with an assessor to see which box I fit into? This is not a system that respects the participants, this seems like a way to cut costs and reduce access to services. Goals are an important way the planning meetings are driven. Without goals we lose our voices to how we want to live independently. This is a system that was built to make the participants be in the driver’s seat with their care. Now the fear that this could take it all away… Please reconsider this decision and any further decisions which limit the ability of the participants to drive the goals to reaching independence and community and social engagement.

Planning needs to stay. Goals also need to stay. Participants need to be treated like humans not numbers.“

“We deserve a voice for a system that was created for us to live better lives. Don’t allow the undoing of a system which has finally allowed participants to drive their own care and outcomes. “

“One of the key values of the NDIS is ‘We value people’. Under this heading it lists ‘The agency puts participants at the heart of everything it does.’ These new changes decrease the individualisation of plans and remove the participants’ individual goals from the process. How can the participant at the heart of a system that doesn’t take their goals into account?”

44 EAC Submission to the JSC March 2021 - Submission

Lack of evidence and testing alternatives

Prior to the announcement of these reforms, many people with disability and their families were frustrated by the slow pace of change in the NDIS. Despite regular identification of common problems and issues, response and change was infuriatingly slow. People were frustrated that some much touted intiatives – such as joint planning meetings with LACs and planners – appeared stuck in never-ending trials and were not rolled fully or accessible to the majority of participants.

It therefore came as somewhat of a surprise to find that these sweeping reforms have been committed to after a single small voluntary pilot with only 500 participants conducted in one geographic area that many did not even realise had been carried out. And given their prior experience, the speed of this rollout has left many people questioning its real intent.

These reforms will have a significant impact on the lives of more than 500,000 participants and their families. They represent a fundamental shift from the original intent of the scheme and from current processes and operation. Given the size and scale of the changes and their impact on participants and their families, many people feel is reasonable to request that the NDIS demonstrate the changes will in fact resolve the problems and issues that have been identified – and are in fact the stated aims of the reforms.

So far no evidence has been provided.

It took a long time for the NDIA to release details of the first pilot. What has been released suggests evaluation of impact has been limited to a short satisfaction survey, take up of which was relatively low. Most importantly, there is no information available about how the assessments relate to people’s plans and funding. And yet that is exactly at the heart of everyone’s concerns. The first pilot and the current pilot are not being subject to a rigorous, thorough, and independent evaluation of either the process or it’s dutcomes.

In backhanded recognition of the anxiety and concern provoked by the rushed introduction of such significant reforms, the NDIA’s own consultation papers asked how people could be reassured. The short answer is that they can’t. People cannot and do not have confidence in a process that has not been rigorously tested and evaluated. Or transparently developed. When questions remain unanswered and concerns unaddressed. Or when they continue to be rolled out and implemented despite the repeated concerns and objections of people with disability, their families and the organisations that represent and support them.

People with disability and their families reasonably request that there is evidence that this will actually improve fairness and consistently before it is rolled out. And given that there are viable alternatives that many people have identified and support, they believe it worth testing those at the same time to see if they provide similar results. Particularly given that there are alternatives with considerably less personal impact on people with disability and their families and less cost to the taxpayer.

“The Productivity Commission report in 2011 argued that independent assessments should only be used when the right assessment tools become available. Those tools still do not exist. The 2019 Tune Review also said that independent assessments should be optional. I agree. However, I believe that the unintended consequences of the current proposal will be potentially devastating for people with intellectual disabilities and their families. Yet, the NDIA have already decided that independent assessments will go ahead and that they will be mandatory. I do not believe they have not done the research or evaluation necessary to prove that independent assessments will work for people living with the experience of an intellectual disability, particularly for people with multiple disabilities and people with complex support needs. The NDIA have not answered many questions about how independent assessments will be used to determine an individual’s support needs. “

“You have not done the research, provided adequate evidence to prove this approach will work.”

“There is no evidence that independent assessors will be equipped to perform the task they are being asked to do. There is no evidence that this process will benefit participants. Common sense alone indicates that this is a backwards step for the NDIS, which at its best provides customised supports to enable people with disabilities to achieve their goals and live a full life. Why then is this step being taken with no evidence to support its efficacy? Is this in fact a cost-cutting initiative?”

Flexibility We began this submission by noting that the vast majority of people with disability and their families do not support the changes as currently planned. There are however two notable exceptions –the increased flexibility in the use of NDIS funding and the increasing use of longer plans. On these points everyone is in furious agreement.

The bureaucratic rules and lack of flexibility in using NDIS funds is one of the most common issues we hear about at Every Australian Counts. Poor policies and processes and inflexible rules that don’t make intuitive sense to people have undermined the principles of choice and control on which the scheme was built. People want to be able to use their funds in a way that works for them. They also want to be able to use them in the ways they believe will be most cost effective. People are therefore very supportive of moves to simplify processes and to increase flexibility.

They are however uncertain as to why this increased flexibility has been tied to the introduction of other reforms such as complusory assessments. It is not clear why one cannot be done without the other.

Longer plans have also long been sought by many people with disability and their families. Particularly for people whose situations are relatively stable. Many people find annual reviews stressful and unnecessary. Longer plans therefore make intuitive sense to people.

But there are two notes of caution. Longer plans means it is necessary for people to have access to quick, simple and easy to use processes to adjust them. Quick and simple are not words that are used to describe current NDIS processes for review and change. People want reassurance that if they sign up to a longer plan, it will be relatively simple and easy process to adjust it. And that changes will be made in a timely way.

The second issue is the impact longer plans will have on the way funding is used. At the moment people are given annual budgets. This gives them a degree of flexibility in how they use their funds. Particularly if something unexpected happens early in their life of their plan, they can use their funding flexibly to adjust – particularly if they have to wait a while for a change of circumstance review to be resolved. It is also important for people whose support needs are variable.

But if the NDIA moves to releasing funds in smaller amounts it will reduce the flexibility in how people can use their funds. It appears to people that while the NDIA are increasing flexibility with one hand they are reducing it with the other. And while the NDIA have flagged that people will be allowed to “build up” funds in anticipation of need later in the life of the plan, this will not assist people who have large expenditure at the beginning of their plan, or who have something unexpected happen early in their plan. Again people will need access to simple, easy to use and timely process in order to maximise use of their funding and reduce the need for formal reviews. The papers do not provide any indication of why a change from annual budgets to monthly or quarterly budgets is necessary. It is not clear what problem the NDIA are intending to solve. And in the absense of more information, people can only assume it is another way to control the use of their funding and is born out of a fundamental mistrust of people with disability and their families.

And finally as we pointed out at the beginning of this submission, greater flexibility will allow people to use their funds in more cost effective ways than is currently possible. That is a very welcome move. But all the flexibility in the world will not compensate for an inadequate or insufficient budget.

And that is at the heart of everyone’s concerns.

“I am concerned too, that there may be limits on the amount of funding available over a certain period of a longer plan. Whilst I can understand this may be necessary in some cases, flexibility should be provided in cases where there has not been any previous misuse of funds.”

“Annual funding must be permitted for all who request it. Having any further restraint is just another form of control by the NDIA, and clearly shows a lack of understanding of disability needs.”

“The idea of introducing a monthly release of funds is absolutely not workable - especially for self managed participants. The primary focus of NDIS has been providing choice and control for participants - we need to be able to choose if we spend more in one month to another. Maybe our disability fluctuates so the amount of support required is double one month what is will be the next. Maybe we’re accessing STA one month which would severely impact the budget compared to another month. Maybe we need to have a whole lot of assessments from OT’s or speech pathologists at the start of the year and don’t need it for the rest.”

EAC Submission to the JSC March 2021 - Submission 49

“Please do not take away what little agency we have in the NDIS process.”

EAC Submission to the JSC March 2021 - Appendix 51