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Joint Standing Committee on the National Disability Insurance Scheme
23/04/2021
Independent assessments

BROWN, Gi, Private capacity

SAYERS, Ms Mary, Chief Executive Officer, Children and Young People with Disability Australia

[10:33]

CHAIR: Welcome. Thank you for appearing today. Is there anything you wish to add to the capacity in which you appear?

Gi Brown : I'm a young person with lived experience.

CHAIR: Would you like to make some opening comments?

Ms Sayers : Yes, thank you. Both Gi and I will make some opening comments. Thank you for inviting us to speak today. I would like to acknowledge the traditional custodians of the land we're meeting on today, the Wurundjeri people of the Kulin nation, and pay my respects to elders past and present. I would also like to acknowledge that this was and always will be Aboriginal land, and sovereignty was never ceded.

I'm delighted to be here today and also to be joined by a young person, Gi Brown, who will share their experience too. We must hear the voices of people with disability in the design and operation of the NDIS. I would like to note that there are no captions for the broadcast, and that is an accessibility issue for people who are trying to listen in today.

The NDIS is a critical piece of Australia's social infrastructure, like Medicare. The performance of the NDIS should be defined by the number of people it supports well, with the money spent being an investment and not a cost. The sheer scale and speed of the rollout of the NDIS is unprecedented and sets Australia as one of the leaders in providing an innovative and tailored disability service system. Ultimately, the NDIS is something that we as a country can be proud of.

Fifty-seven per cent of all NDIS participants are children and young people aged 25 and under. Members of our community have shared with us that, when the NDIS is good, it's transformational. The power and impact of the NDIS was encapsulated perfectly by a comment from a young person in our 2021 NDIS survey. When asked, 'What's the best thing about the NDIS,' the young person shared, 'I'm eternally grateful for the NDIS. Without the NDIS, I would be, in my mid-20s, either in aged care, in hospital or homeless. The NDIS has allowed me to live in my own home, drive my own car and live my life how I choose to—independently. Absolutely life-changing.' While the NDIS can be great, it's also widely acknowledged and documented that it requires ongoing development and improvement so all people can benefit equally.

Since 2012, CYDA alone has submitted to 16 independent inquiries, including this committee, representing hundreds of pages of feedback, and attended hundreds of NDIA run meetings and consultation. We are not alone. The disability community and disability advocacy organisations across the country have done the same. Together we have proposed many recommendations for NDIS improvements, such as fixing planning; addressing thin markets; improving the workforce; and inclusion of people finding it hard to access the scheme, such as Aboriginal people, culturally and linguistically diverse people and people living in low-socioeconomic circumstances. However, the independent assessment reform proposed by the NDIA not only fails to address existing implementation issues but will reinforce and exacerbate existing inequalities and create new ones.

After Australia has taken so many steps towards providing more dignified and appropriate supports for people with disability, the introduction of independent assessments under the NDIS is one giant leap backwards. The agency has decided to blatantly ignore the advice and lived experience of the disability community and evidence of independent inquiries and instead has opted for a model that is untried and untested. No other disability system in the world has used this approach.

We propose to you that the evaluation of the pilot of independent assessments currently underway is bogus. It does not test the implications of the assessment for a person against a proposed budget or a plan. It does not seek to compare existing evidence for eligibility against the results of the assessment. It is not independent and conducted by credible researchers who do not have a stake in the outcome of the pilot. The feedback questions asked in the pilot are testing a customer service experience, such as 'Did the assessor arrive on time?' This is not real evaluation of a reform that is so big that it could change people's experiences of the NDIS in really fundamental ways. CYDA rejects the process being undertaken as objective, rigorous or ethical enough to determine any reliable findings.

While the NDIA failed to consult with the community, people with disability, their supports and advocacy organisations, we sent out a survey to understand our community's experience of the NDIS and their thoughts on independent assessments. In total, 270 young people and families of children with disability took part in the survey. As outlined in our submission, our survey data, worryingly, reveal that almost one in four respondents reported being unaware of the introduction of independent assessments, only 10 per cent reported finding out about independent assessments directly from the agency, and there were high levels of concern about the proposed changes. Eighty per cent of respondents feel the introduction of independent assessments will be a negative change to the NDIS. A young respondent also commented: 'As someone with a rare and misunderstood disability, I am petrified about independent assessments. I dread the thought that someone who knows nothing, or totally incorrect information, about my disability, and who only meets with me for maybe an hour, will determine the funding I get and, therefore, determine my life—as opposed to providers who specialise in my disability, whom I have known for years, and who know my needs. I think it is disgusting that the government is employing such a model on vulnerable disabled people. Where is the choice and control?'

In closing, our submission outlines the depth of CYDA and our community's shared concerns about the introduction of independent assessments. This includes the lack of community engagement and genuine consultation; the absence of an evidentiary basis for the reform; the failure to address existing equity issues and barriers; the undermining of individuals' lived experience and goals and aspirations; the lack of consideration of the broader NDIS ecosystem; and the appropriateness of, or lack of evidence for, independent assessments for young children. I will close there and hand over to Gi.

Gi Brown : I want to thank the committee and CYDA for allowing me to be here. I also want to pay my respects to the land that we are meeting on today and the Wurundjeri people of the Woiwurrung and Daungwurrung language groups. I pay my respects to elders past, present and emerging. I also pay my respects to any Aboriginal and Torres Strait Islanders who may be joining us here today. I acknowledge that sovereignty was never ceded and that this always has been, and always will be, Aboriginal land. My name is Gi and I go by they/him pronouns. I am an 18-year-old transgender disabled person. I am not here to regurgitate facts that you have read in the many submissions; I am here as a disabled person, and as the sibling of a disabled person, to tell you that you are going to reverse what has been designed to support us, and replace it with a process that cedes us nothing more than a capability.

The NDIS has been a long-lasting figure in my life. My younger brother has been receiving NDIS supports since its pilot in Victoria. My family has witnessed and experienced firsthand the NDIA and its scheme, with its many trials and tribulations. When my brother started with the NDIS, as with many families, it was a welcome reform. Resources that once would have been impossible to access were now available, and this would change the lives of thousands of people across Australia. The current process works. As with anything, it can always be improved. But it works. In a conversation with a family member, they highlighted that one of the best and most essential parts of the current process is that my parents, as well as the support providers my brother has been accessing, were central to the assessment process. The people who know my brother best know what's best. The introduction of independent assessments is going to take away what many families feel is the most valuable part of the current process and place the needs of a person in the hands of someone they do not know.

Despite my first stated fact that the NDIS is a long-lasting figure, I did not find out about independent assessments from the NDIS; I first heard of it in an ABC article. I found out the first bit of information from CYDA, and I then went to the NDIS to get information straight from the source. To be frank, I wish I hadn't. Not only did I not find out about independent assessments from the NDIS, but the information that was supplied by them had made me even more confused, to the point of tears. Why couldn't I just understand something that would directly impact my life? I have had to deal with stigma and oppression from family, friends, the education system, medical professionals and strangers as a young disabled person for many years now. I've had to fight to be heard when I say I'm a complex human being who is not frozen in time at any given moment.

The independent assessment brings one main word to mind: static. This new assessment sees disability as something that does not fluctuate, does not change and does not exist within a contextual environment. Some days I can get out of bed and complete my personal hygiene routine, go to university and feed myself. And some days I am paralysed in place by pain that grips every inch of my body and mind. According to independent assessments, I will be deemed as having high ability and functioning. I may as well not be disabled. On the days and weeks where I need help to even hold myself upright, I will just have to suck it up or pay hundreds of dollars out of my own pocket—money that I do not have—to receive even one hour of a resource.

A stranger, who may or may not be familiar with my disabilities, will be assessing me in a three-hour period. I may be feeling well that day and I may be feeling able that day. My assessment reflects this one particular three-hour block of time and I am capable. This stranger may be, for example, a physiotherapist. They are acutely aware of the pain in my joints and the weakness of my muscles. They don't know much about autism or ADHD; they assess that part of me through a black-and-white checklist. It doesn't reflect the true nature of my disability, and my supports end up being wrong.

This stranger, and this three-hour block, frightens me. Having unequipped healthcare professionals complete these assessments feels like a nightmare come to life. I spent six years battling healthcare professionals to do something as simple as listening to what I have to say. It took me almost four years, and multiple healthcare professionals, to allow me to have one ultrasound. For your information, the ultrasound confirmed what I thought I had. The medical system has scarred me, traumatised me and belittled me. I know for a fact that this is a common occurrence in the disabled community. To have a healthcare professional complete our assessments is going to be too much for some people and it is going to leave permanent scars that never quite close. I do not want to beg but, on this issue, I urge you to listen. Pease do not have healthcare professionals complete these assessments.

I also ask you to reflect on NDIS participants who may have no family or outside support, be linguistically diverse or have high complex needs or intellectual disabilities. Who will advocate for them in this process? How will those people be able to be fairly assessed? I ask this hypothetically as I already know the answer, which is that there will be no advocate and there will be no fair assessment. For those with no social support or who are linguistically diverse, I wonder how this will be accounted for in the assessment. I wonder how the NDIA thinks they can complete an assessment without acknowledging a person's contextual environment. Will it be acknowledged that I am transgender and that my support needs will differ because of this? What about my education? It is impossible to fairly and accurately assess someone without taking into account the context. This fact is going to allow far too many disabled people to fall through the cracks and fail to be adequately supported, if at all. Again, we are complex human beings, we are individuals, and we are not static.

The final flaw I would like to draw attention to—and there are many more flaws—is the apparent absence of developmental goals in the proposed independent assessments. The hallmark of current assessments is that developmental goals are often at the forefront of the betterment of the daily lives of the disabled. Without the consideration of developmental goals, I am left to wonder what it actually is that these assessments are trying to achieve. These assessments are from a capability standpoint, with no considered context of goals, and all that will be available to access is essential support for what we are deemed incapable of doing—and this is the bare minimum.

As previously stated, many of us will fall through the cracks of this process. The NDIA is placing disabled people in the same situation we were in prior to the introduction of the NDIS. It implies that we do not have goals to work towards to improve our quality of life and it implies that we don't have goals in daily living, dreams, aspirations or ambitions. Independent assessment is a threat and a risk to disabled lives. It does not account for our individuality, our autonomy, our right to choose or our aspirations. There are many ways I could suggest to improve these proposed assessments but they become redundant in light of my first recommendation, which is that you not implement independent assessments at all. Instead I urge you to listen to the organisations who have provided submissions, I urge you to listen to disability advocates, and I urge you to listen to the disabled lives this impacts most. I understand that the NDIA wants to reduce costs, labour and resources, but cutting corners and threatening quality of life is not how you do it. This is not ethical.

You've been supplied evidence of lived experience and case studies. I have not been subtle in highlighting the flaws and problems—as I know many more disabled people have not been and will not be. This is not a matter of not having enough information or evidence; it is a matter of poor policy, poor governance and poor inclusion. Stop speaking for us, and start listening to us. It's time for the NDIA, and its scheme, to represent and support the people they exist to protect.

CHAIR: Thank you very much. Ms Sayers, I am not sure whether you were present when Professor Bonyhady gave his evidence about the assessment tools—

Ms Sayers : Yes, I was.

CHAIR: In summary, he said they weren't designed for this purpose and it's not true that they are globally recognised for this purpose. Do you concur with that evidence?

Ms Sayers : Absolutely, particularly for young children. We have consulted with academics who are expert in these areas. Some of them are screening tools, not functional assessment tools. A screening tool is very different from a functional assessment tool. I am not an expert in assessment tools but what I can say is that there is inordinate fear among our community, particularly the families of young children, that a stranger is a completely inappropriate way to do an assessment. An authentic assessment—and there is evidence around authentic assessment which we've highlighted in our submission—is done by a person who is known to the child.

CHAIR: Dr Martin, in questioning Dr McHugh, was drawing a distinction between diagnostic assessments and functional assessments. Is that a valid distinction to draw?

Ms Sayers : I think it is. When we heard that the Tune review was implementing assessments, we didn't know what type of assessments they were. We thought, 'Great, that means people who can't afford to get the diagnostic assessments might get access to the scheme.' But people still have to pay all the money to get all the diagnostic assessments and then they have to go through an independent assessment. So it's not actually introducing the equity into the scheme that, when we first read the Tune review, we thought it might. As the previous speaker said, people will still have to spend thousands and thousands of dollars getting psychological assessments to prove diagnosis. So the very fix that these independent assessments are trying to do to make the scheme more equitable are not going to work because many people already have barriers to accessing the health system, as you have heard from Gi this morning.

CHAIR: You mentioned the Tune review. In your submission you state that the NDIA has selectively used parts of the Tune review as justification for the proposed independent assessments program without including the necessary and recommended safeguards. Can you elaborate on that.

Ms Sayers : Safeguarding goes across many mechanisms: safeguarding around the outcome of the assessment and that you can appeal the assessment—that hasn't happened—and safeguarding that the person is actually appropriate. It's still very unclear to us whether the assessors are going to have full regulation under the NDIS Quality and Safeguards Commission. It's very unclear that if people are unhappy with their assessment—from what we have read so far, if you choose not to do your assessment you are deemed to have refused to participate and then your eligibility for the scheme might be knocked back. So, if the person is not appropriate and something goes wrong during the assessment, where are the appeal rights? So I think safeguarding covers multiple elements, including the role of the NDIS Quality and Safeguards Commission.

Senator CAROL BROWN: Thank you for coming along and giving your evidence today—and particularly you, Gi, because it's very important that we have the evidence of people with lived experience. My first question goes to you, Ms Sayers. In your opening statement you called the whole process bogus. Could you elaborate on why you believe the trial process and the consultation process are bogus. Do you really believe that this is some sort of elaborate sham in terms of consultation and having a pilot just to get to the point where independent assessments or roboplanning is introduced?

Ms Sayers : I know 'bogus' is strong language, and it comes from many multiple points. The point that the evaluation is not actually testing the implications of having an independent assessment; it's just testing: 'What was it like for you? Was the person nice to you? Did they turn up on time? Did they listen to you?' That's very different to actually testing whether that assessment accurately reflects a person's disability. And what are the implications of that assessment? We provided a case study and they have repeatedly asked for the independent assessment back from the NDIA that was completed back in early March. They haven't received it. Yet, they got the survey about their experience even before they've received a copy of their independent assessment. That is not good evaluation. That is not good research.

The other thing is that research should also be done independently. If we really want to test whether this works, NDIA is both the pilot and the evaluator and has a vested interest, if you like, in the outcome. We have had the NDIA on record saying that this is about scheme sustainability. So you can't help but come to the conclusion that this pilot is not an authentic pilot. People are also being paid to do this. We always recognise that people should be paid for their time, but has that been considered in terms of any potential biases that that may have in the evaluation and the research? We are deeply concerned. I know bogus is a strong word, but bogus also goes to the fact that there's not been deep consultation with the sector.

I attended CEO forums after the announcement by the minister about independent assessments, and we were told by the CEO of the agency that talking about independent assessments and whether they're going to be implemented is not negotiable. That is not deep consultation and is very worrying. As mentioned earlier, the consultation papers that the NDIA put out did not talk about whether independent assessments were a good idea, did not talk about the potential risks. It said, 'How can we implement them?' The decision was a foregone conclusion. That is not real consultation.

Senator CAROL BROWN: So you're saying that the NDIA CEO consultation essentially ruled out what wasn't going to be consulted on—that is, independent assessments. What did he say was going to be consulted on?

Ms Sayers : How are we going to do it? So it was a foregone conclusion, if you like. You may know that 20 disability representative organisations, including ourselves, submitted a joint statement. That was a last resort. We didn't want to do that. We've been meeting since late last year trying to outline our concerns to the NDIA, but we keep getting told, 'This is not on the table.' So, in some ways, the whole thing has been bad, as Gi said, public policy, as we know it, for a scheme that's so important.

Senator CAROL BROWN: Professor Bonyhady, in his evidence, indicated that this is a critical point in the NDIS where we either go down the road of independent assessments or maintain the position of choice and control. Do you really believe that independent assessments will take away choice and control and change the scheme dramatically from what was the original intention?

Ms Sayers : I do, and Gi might like to answer this question as well. We have been hearing about this personalised budgeting tool, and what we hear is that the independent assessment will spit out numbers. It will go into an algorithm and spit out a budget and a plan. To us, it takes away the control that is particularly important for children and young people. It's what an insurance scheme is meant to be: how can they reach their potential and developmental goals? I don't know, Gi, if you've got anything else you'd like to add?

Gi Brown : With the current assessment process, as anything can be, it can be improved, but it works. An important thing for a lot of people is that the people who know the participant best, including the participant, are included. I know from my family's experience with the current process of assessment, if I could describe it briefly, we use a third-party support coordinator to help us do the assessment, to help us find the support services that are available. This is passed on to the NDIA to be calculated, the budget, what supports are possible. Then we would meet with an NDIS support coordinator who would ask us direct questions: 'Are you happy with the supports we have evaluated? Are you happy with the budget? Are the goals correct? Are the goals accurate? Can you access these support services?' Not only that, they would also ask families: 'How are you going? Do you need support? Do you think that these supports are fair?' That process is not only important for a fair and accurate assessment, it's really important for trust. It's really important for relationships.

The independent assessment takes away that choice and control, where there would be an evaluation after the assessment to say, 'Actually, this isn't correct. Can we change this? Can we re-evaluate this?' It's so centred on the participant that, if this were applied to families, families could also lose their support. That's a really detrimental thing to the amount of trust that the public has in the NDIA, to the amount of proper support that participants can receive. I cannot see how it protects its participants and their families.

Senator CAROL BROWN: So the feedback you're receiving is that the proposed process, with independent assessment, takes away choice and control?

Ms Sayers : Yes, we would say that.

Senator CAROL BROWN: It moves away from the actual intent of the NDIS.

Ms Sayers : Yes. Could I elaborate on that? The narrative from the agency is, 'Yes, you still have choice and control because you'll be able to flexibly use your budget.' They're tying the whole reform to, 'You can only have a flexible budget if we have independent assessments.' The agency would very much disagree with that, but we say choice and control for children and young people, particularly when we're going through life-changing transitions, from primary to secondary, secondary to university or to TAFE or employment, needs to have nuance. We need to tie in participants' goals. That's what an insurance scheme should do.

Senator CAROL BROWN: In the way you've described it, that's why the description of roboplanning seems to be apt in its description.

Ms Sayers : Absolutely.

Senator CAROL BROWN: I want to go quickly to Minister Reynolds' announcement about pausing of the introduction, I think is her term, of independent assessments. Do you know exactly what the minister is referring to there?

Ms Sayers : Other than the media reporting, there's not been a public statement, to my knowledge. But in the media reporting it said 'pausing until we hear the results of the evaluation' and I've done consultation. We've got a meeting with Minister Reynolds next week, which we really welcome, but if you're 'pausing to wait' for what I did say was a 'bogus' evaluation then that's not right either. We would posit that you need to go back and do a proper evaluation that's independently done and that really looks at the deep implications of this—in what circumstances independent assessments work and for what people. That has not happened. We would say that a pause is welcome so we can all regroup and catch our breath. That's why we'll be looking to this committee to make some really strong recommendations about what it means and what a rigorous evaluation might look like.

Senator CAROL BROWN: I have seen some commentary that talks about a pause. Minister Reynolds has announced a pause, but obviously the trial is still continuing as is the evaluation of that trial. It seems to me that the time line may still be the same. The community thinks there's a pause going on, but it seems to me—unless you can tell me, Ms Sayers, that you've been advised otherwise—that the time line that was put in place under the previous minister is still the same.

Ms Sayers : As I said, it is very hard to get information, but, from my understanding, the pause is on the legislation that was due to enter parliament. An exposure draft was promised at the beginning of March. My understanding—and I'm happy to be corrected by others—is that in order to implement independent assessments for existing participants there was a requirement for legislative change, and that has been paused. The legislative change piece has been paused. We are deeply concerned that this has been proposed to be rolled out. Tenders, as we heard in Senate estimates, have been awarded to organisations to do the independent assessments without the required legislative change.

Senator CAROL BROWN: So all that's happened—

Ms Sayers : Yes.

Senator CAROL BROWN: and the legislation was supposed to be tabled in the next half of the year, but we still don't know whether that time line is in place?

Ms Sayers : In many ways, to me, it seems to be putting the cart before the horse. As I said before, with the Tune, we were hopeful that those recommendations might help with some of the barriers to people entering the scheme. But the proposed model is nothing like looking at people who may face extreme barriers. For example, we know the Tune review recommended navigators to help culturally and linguistically diverse community members and Aboriginal community members access the scheme—and I understand you'll be hearing from some of those people in this committee as well. That has ceased being funded.

Tune had some good recommendations. But we looked at one recommendation, which was around independent assessments. It's a very simple solution—but a dangerous solution—to very complex problems with the NDIS implementation. We need improved planning. We heard this morning about the money that's being spent on administration. We need good planners, like those Gi has been working with, and we need to invest in those sorts of reforms. The feedback we get from our members is that it's a bit hit and miss. The NDIS workforce is hit and miss. If you get onto a good planner or a good LAC or a good ECEI, that's great, but there are many who don't experience that. We need simultaneous reforms looking at multiple access. Thin markets is another area that this committee has been very interested in as well.

Gi Brown : I'd like to point out as well that I don't think the NDIA understands the implications or has taken into account the implications of the fact that information is very hard to access as a disabled person. I'm in a privileged position where I can get information from CYDA, but I am one out of a thousand people who would be in that position. For the general public, who do not understand whether the implementation of independent assessments is paused or whether it's still ongoing, if something like that is not made known to the public it is going to really tarnish the trust of the general public in the NDIS. It's going to make a lot of people reconsider how they support the NDIS and how they access it. The only information I've had, besides that from CYDA, has been from public reporting, which would be the main source of information for the general public. As we know, reporting isn't always accurate. It's not in-depth. You can see how trust can be massively diminished for the general public when we do not receive information from the agency implementing policy that impacts us directly.

CHAIR: Thank you. Dr Martin.

Dr MARTIN: Thank you to the witnesses this morning. I appreciate your personal insights, Gi, and I appreciate your sharing them with us this morning. It's very helpful. My question is really for Mary, Chief Executive Officer, Children and Young People with Disability Australia. It goes back to the point made earlier about the distinction between diagnostic assessments and assessments conducted for the purposes of ranking functioning for the amount of funding required for each individual. Diagnostic assessments are required for access to the NDIS, and you mentioned that the costs of diagnostic assessments are expensive. Of course, that would be true for some individuals who are seeking diagnostic assessments privately, but would you agree that states and territories provide assessments for individuals, particularly children, suspected of a disability?

Ms Sayers : Yes, I would, but we have long waiting lists. We know our health system has waiting lists in the public system. I will use my own son's experience of an autism diagnosis, even though he is now 30 and it was pre-NDIS. It took us over a year to get a diagnostic assessment, which included reports from multiple psychologists and paediatricians. When we look at health literacy, we know there are socioeconomic gradients in health literacy. At the time, pre-NDIS, I was in the enviable position that I could afford to do that. But, again, that diagnosis can actually take a significant amount of time. I don't see how a three-hour independent assessment, which is not meant to be a diagnostic assessment—it's meant to be a functional assessment—can actually help with that issue of diagnosis.

I'll also draw your attention to our submission, where there is evidence about best practice in assessment. That was on page 22 of our submission. It also talks about the importance, particularly for children, of the ways in which practitioners obtain information—that they identify family preferences, that it's done in a natural environment for children and young people and that it uses a variety of methods, including observations and interviews, to gather assessment information from multiple sources, including the child's family and other significant individuals in the child's life. What we can see from the process is that this is not authentic assessment, even of functioning. The best practice guidelines that we highlighted in our submission are not part of the current design of the independent assessments.

Dr MARTIN: With the best practice design for assessments, I think the word 'assessments' could potentially be causing some confusion in this. The diagnostic assessments are obviously distinguished from the functioning of independent for the purposes of funding. Would you agree or disagree with that?

Ms Sayers : I'm not 100 per cent sure I understand your question, to be honest. I want to clarify: are you asking if a functional assessment is different to a diagnostic assessment? Is that the question?

Dr MARTIN: Yes, my question is: is a diagnostic assessment for somebody who is suspected of having a disability—that is often usually a child—distinguished from what the NDIS and the NDIA are requiring for the purposes of assessing functioning at the time for appropriate funding?

Ms Sayers : Not being a scientist or an academic who is expert in assessments I'll answer in this way. Our members, including the 270 people who completed our survey, said that there is no way in three hours someone would be able to assess the functioning of their child. That's not about diagnosis; that's about the functioning. The three-hour assessment is not able to observe the child in their natural settings—and that might be in preschool, in school or in the community. In the assessment tool, functioning is very much yes/no questions. It's very binary: 'Can the child do this? Can the child not do that?' As Gi said, on some days they might be able to but on other days they may not be able to. The feedback we've had is that three hours is insufficient time to understand the functioning, putting aside the diagnosis, of children and young people.

Gi Brown : I'd like to point out as well that for me to receive an autism diagnosis the diagnosis alone was a four- to five-month process. That was the diagnosis alone. That may be a short diagnosis, as I was diagnosed as an adult, which often excludes observation and usually goes straight to anecdotes of childhood and screening tools. Diagnosis for an adult with autism is four to five months, which excludes a crucial part of diagnosis. That gives you a time line for how functional assessment should be done. Three hours is not adequate for that to be done.

Dr MARTIN: Thank you, Gi. I want to go to diagnostic assessments again. A full workup would be done only once. Once that initial diagnostic assessment has been done there would be review assessments by health professionals. What the NDIS and NDIA are calling independent assessments are really about functioning at that current point in time. Would you agree that previous reports should be included in an application? Should reports done in the past or reports written by a schoolteacher at the time also be included in the application? Should the observations of a childcare professional be included in the review process?

Ms Sayers : I will say two things. It's not clear from the information from the NDIA how other information will be used. The second thing I will say is that we're talking about 57 per cent of participants in the NDIS who are aged between zero and 25. The development and the changes that happen over that period are quite profound, so we agree that assessment needs to occur to take into account those developmental changes, but what we're saying is that the current proposed method has not been fully evaluated and has not been trialled effectively to look at what that means in terms of the developmental life course of a child or young person. The evaluation is just not picking that up. Those three hours are then tied to a budget and a plan through some algorithm in a personalised budgeting tool. I don't know how that's going to take into account those developmental ages and stages that are so critical across childhood, adolescence and early adulthood.

Dr MARTIN: Just to reiterate, what you're saying is you're not sure how other information that's been submitted with the application for the functional assessment is being utilised in that process.

Ms Sayers : It's completely unclear how that information will be used when we hear about this personalised budgeting tool. There's even no transparency about this personalised budgeting tool. We've had a presentation as CEOs from the Scheme Actuary about that. There's certainly been no public consultation about that, so there are so many unknowns in this whole process.

Senator STEELE-JOHN: From what we've heard from other witnesses and yourself, what we seem to have here is a situation—I just want to clarify—where we have a proposal made around independent assessments that combines assessment tools in ways that they have never been combined before to draw conclusions that they were never designed to draw. We have a fundamental reversal of the access goal planning budget process so that basically now stands on its head. And it seems to me that in your interactions with the agency, these changes have been presented as a fait accompli rather than something that is being explored authentically with the disability community. Is that a correct characterisation?

Ms Sayers : Yes, that's a correct assumption. As I said to Senator Brown, we were told that the introduction of independent assessments was not negotiable and any input or feedback even into the design of the pilot was not sought from the sector—unless it happened at meetings I was not at. But I sit on the CEO forum convened by the CEO, and we were not consulted on design of the pilot nor the assessment tools. We were asked many times: what are these assessment tools? Then we were told: 'You can read the paper. This is what's going to be implemented.'

Senator STEELE-JOHN: In describing it to you as non-negotiable, did you have the opportunity to raise the concerns that you've raised with us around the trial actually asking a bunch of consumer experience questions as opposed to actually testing whether the outcomes are accurate? Were you able to ask those questions of the agency at any point?

Ms Sayers : I'll only speak for myself, but I think it's fair to say that at meetings we raised this ad nauseam. We raised all the concerns that we've raised to the committee many, many times. We obviously did our joint statements where we asked for the agency to go back to square one and design a better process. I think it's fair to say that these statements that I'm making are based after multiple, multiple requests for changes to the agency and requests for information that often came after decisions were made, after pilots were planned. We were asking for an independent evaluation right from the start, and that has not occurred. Instead, we've got a customer service evaluation, which is not a true evaluation.

Senator STEELE-JOHN: It seems as if the agency has taken an almost belligerent approach to its engagement with disabled people's organisations in relation to independent assessments.

Ms Sayers : I guess I used the term bogus around the evaluation, which is strong language. It's been relentless. I would also like to say that as a national disability representative organisation which is funded $300,000 for our disability advocacy, and we need to cover education, health, abuse and neglect, post-school transition, employment and the NDIS, if I had to do a chart of all the time that I've probably spent since November on NDIS concerns it would be about the majority of my work. The problem is that disability representative organisations like ourselves, who work with young people to amplify their voice, are completely underfunded. We're doing this in light of the fact that the agency is making so many demands of us. The consultation, unfortunately, has not been authentic, in my view.

Senator STEELE-JOHN: The consultation itself—it sounds like you're describing the agency approaching it from a space of almost bad faith.

Ms Sayers : Not on every matter, to be fair to the agency. On other matters, there's really good consultation. The agency is developing a support for a decision-making process at the moment and they've really deeply consulted with us about that. They've taken on our feedback. But on this issue of independent assessments alone, we have not been able to have our concerns heard. When we're in meetings even senior bureaucrats—not necessarily the CEO—will say 'Let's not talk about the elephant in the room.' I do wonder how much we have been able to influence change when we're not even allowed to talk about it, sometimes, on the agenda. We raise it regardless, because we are belligerent; we're advocates, and that's what we're paid to do. On this issue the agency has not consulted. On other issues they do a good job.

Senator STEELE-JOHN: I have a question for Gi. In relation to the evidence you gave at the beginning, one of the things that you were kind to share with us is the reality for folks with disabilities, particularly those whose impairments change from day to day, week to week, month to month based on a multitude of different factors. Having somebody coming in and viewing you for a couple of hours on a day, doesn't really work, because you could be having a good day or a bad day. Either way, it's not representative of what your support needs are a majority of the time. Is that right?

Gi Brown : Absolutely. In my personal experience some of the characteristics of my disabilities, which include mental health, neurodevelopmental and physical, can even fluctuate on an hour-to-hour basis. As I have multiple different disabilities and they overlap, I feel as though the independent assessment done in the way that it is, done in the time frame that it is done in, by the people doing it, is really just not representative. As I said before, just my diagnostic process alone took four to five months. That's not including functional capacity; that's getting a diagnosis. For some diagnoses, it took upwards of six years. There's no way that the NDIA can seriously think that disability can be accurately assessed and represented in a three-hour period when human beings, by their nature, are complex and you add in disability with that. It's just not going to work.

Senator STEELE-JOHN: Particularly when tools like WHO-DAS are based around a 30-day period as well. One month might be good for a person, another month might be bad. I guess we'd run into the same problem there, wouldn't we?

Gi Brown : This comes back to the problem that information has not been made available to the general public, and when it has been has been made available, it's been very confusing and convoluted. I am not aware of any review process; I'm unclear on an appeal process as well for people whose disability and the characteristics may fluctuate on a more extended basis—say, month to month or even longer than that. Simply put, it's not fair. I know people who, at one point in time, would appear to not be disabled at all, would appear to not need any supports at all. There's already a problem in the NDIS where those people who have a longer period of time where their characteristics fluctuate are already barred from the NDIS, and the independent assessments are just going to exacerbate this problem and make it worse. In my personal opinion, it's going to lock out more and more people. People who fluctuate on a month-to-month or longer basis are already locked out, but it's going to lock out people who really just don't fit within the tiny little box that is a constant characteristic of disability.

Senator STEELE-JOHN: Under the model proposed there, the independent assessor that would interact with you would be one of six types of healthcare worker, with whom you had no previous relationship. That's a function of the design of the assessment as proposed. The assessment, once made, would then carry through to the amount of money you were allocated. And the nature of that assessment would not be subject to appeal, so there would be no way for you to appeal the conclusion that had been made by the assessor. How does it make you feel when you think about a stranger coming into your home or into your space to make a set of judgement calls on you and your needs in a way that could so profoundly change your life without the ability of you to ask for an appeal in the process?

Gi Brown : As I said in my opening statement, some of these things, especially the fact that a stranger is doing my assessment, and the six categories of the people who will be doing those assessments have often been people that I have had very traumatic experiences with—it terrifies me. Quite frankly, it deters me from wanting to access the NDIS. Unfortunately, the NDIS doesn't care—the NDIA doesn't care that one person is going to be deterred from their services—but that could change my entire life. This is someone coming into my home. Home, for a lot of people—and I think this is a very important subject that could be talked about for hours alone—is an especially valuable thing for disabled people, and it is often somewhere that is the only place that disabled people feel safe. That has often been the case for me. To have that invaded by a person who I do not trust, who I do not rely on to be fair and to be just, and who I've had previous traumatic experiences on makes me feel like a bit of an animal caged up in a zoo, if I'm being frank. Sorry—even talking about this makes me emotional. Having someone come into my home and assess me in a three-hour period on something they have no knowledge on, on something on a checklist that says 'yes' or 'no' and does not account for me as an individual, does not make me feel like a person. It does not make me feel like someone that is valued in Australian society. Yet again, I will repeat that I am in a privileged position where I have the opportunity to speak for myself and I have the ability to advocate for myself and I have a platform, and the fact that that terrifies me—I can only imagine what it feels like for people who do not have advocates and for people who cannot use their own voice. This is, quite frankly, in my personal opinion, a very inhumane way to treat disabled people.

Senator STEELE-JOHN: I share those feelings with you, too, when I think about somebody coming into my home for the same process. Can I just clarify this, because I think it's a really important point. It seems that what you're saying to us is, should this process go ahead, you would have to think very hard and might, in fact, choose not to engage with the NDIS in order to safeguard yourself from that experience; is that right?

Gi Brown : Yes. As I said, I have already had many traumatic experiences with healthcare providers. The way that the independent assessments are being implemented, the way that they are done, it is not worth the mental trauma for me to access these supports, because I can't even guarantee that I will receive any support, and, if I do, I cannot guarantee that it is the correct supports. And, as has been stated, there is no appeal process. So it leaves me to wonder. I have no guarantee of support. If I receive support, I have no guarantee of the correct support, whether it be the type of or the amount of. I have no guarantee that I will be protected from abuse, bullying, gaslighting from the people who are doing the assessments. I have no guarantee that I will be protected. The pay-off—there are not enough positives from the independent assessment for me to go, 'Well, I might as well do it,' because I might as well not do it, because I could receive nothing and end up worse off than what I was prior to engaging in an independent assessment.

Senator STEELE-JOHN: Alright, thank you very much. Thanks for sharing your perspective with us. I will pass back to you, Chair.

CHAIR: Just one final question from me. Ms Sayers, you and other witnesses have made reference to an algorithm. What's the source of that information? Was that the briefing with the actuary?

Ms Sayers : Yes. The scheme actuary has provided a PowerPoint that explains the personalised budgeting tool to a CEO forum, to explain it. But certainly we don't understand the details of what this personalised budgeting tool will look like. My understanding from what we were told was that the outcome of the independent assessment is plugged into a model and then a dollar amount and a plan spits out at the other end.

CHAIR: Thank you. Can I thank you for your submission and thank you both for coming along and discussing it with us this morning. We appreciate that. We'll have a short break. I appreciate we're running about an hour behind time. I will encourage myself and my fellow members of the committee to be more brief in our questions from now on. Thank you.

Pro ceedings suspended from 11:37 to 11:42