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Joint Standing Committee on the National Disability Insurance Scheme
Independent assessments

BURNETTE, Ms Lisa, Chair, People With Disabilities WA [by video link]

CULLINAN, Mr Brendan, Executive Director, People With Disabilities WA [by video link]

CONNOR, Ms Samantha, Private capacity [by video link]

Committee met at 10:32

CHAIR ( Mr Andrews ): I declare open this hearing of the Joint Standing Committee on the National Disability Insurance Scheme. These are public proceedings, although the committee may determine or agree to a request to have evidence heard in camera. I remind all witnesses that, in giving evidence to the committee, they are protected by parliamentary privilege. It is unlawful for anyone to threaten or disadvantage a witness on account of evidence given to a committee, and such action may be treated by the Senate as a contempt. It is also a contempt to give false or misleading evidence to a committee. If a witness objects to answering a question, the witness should state the ground upon which the objection is taken and the committee will determine whether it will insist on an answer, having regard to the ground which is claimed. If the committee determines to insist on an answer, a witness may request that the answer be given in camera. Such a request may be made at any other time. I remind those contributing that you cannot divulge confidential, personal or identifying information when you speak. If you wish to supplement your evidence with written information, please forward it to the secretariat after the hearing.

I will say at the outset that we are grateful for various witnesses being able to rearrange their schedules. This was meant to be a hearing in Perth but, because of the current uncertainty about COVID restrictions, we had to change the arrangements in order to guarantee that we could have the hearing. So thank you to everybody for changing their schedule to enable this to happen today.

I welcome Mr Cullinan and Ms Burnette, representing People With Disabilities WA, the first organisation to appear here today, and Ms Connor, who has joined us as well. Do you have any comments to make on the capacity in which you appear today?

Ms Connor : I'm appearing as a disability advocate from multiple organisations.

CHAIR: Thank you for your submission and thank you for joining us. I invite you to make some opening comments.

Mr Cullinan : Yes, I will, if I may, on behalf of the organisation. I first acknowledge the traditional owners of the lands on which we are gathered here in Perth this morning, the Wajuk people of the Noongar nation, and pay our respects to elders past, present and emerging. People With Disabilities WA is the peak disability consumer organisation representing the rights, needs and equity of all Western Australians with physical, intellectual, neurological, psychosocial or centric disability by individual and systemic advocacy. People With Disabilities WA is run by and for people with disabilities, and it aims to empower the voices of all people with disabilities in Western Australia.

Along with the broader disability sector in WA, People With Disabilities WA have expressed our deep concerns about the introduction of independent assessments for NDIS participants. It is acknowledged that the system would benefit from having greater consistency, but we believe that the introduction of independent assessments will fundamentally alter the individualised and personalised nature of the NDIS with an automated system that will not adequately consider individual need and circumstance.

Consultation undertaken by People With Disabilities WA has highlighted a number of grave concerns with the proposed reforms. There are concerns that the intent behind the reforms is a desire to cut costs as a main motivation for the hurried introduction of the reforms. I refer also to the independence, expertise and competency of assessors to determine the functional capacity of an individual across a broad range of disabilities and in a very limited time frame—for example, three to four hours. There is the appropriateness and accuracy of standardised functional capacity assessment tools that must be used as directed by the NDIA. The assessments will be used to determine participants' plans and funding but with no articulation of how or opportunity to challenge or appeal. There is a lack of transparency around the results of modelling and testing.

We applaud the recent announcement by the Minister for the National Disability Insurance Scheme, Senator the Hon. Linda Reynolds CSC, to pause the planned implementation of independent assessments pending the outcomes of the current trial and further consultation. People With Disabilities WA hope this pause creates an opportunity for a reset and to embrace and implement a true co-design process to ensure that people with disabilities' rights to engage as equal partners in decisions that affect their lives are upheld.

CHAIR: Thank you, Mr Cullinan. Ms Burnette or Ms Connor, do you have opening statements?

Ms Burnette : I don't have an opening statement, thank you; Brendan's opening statement reflects my views.

Ms Connor : I do. As well as being the president of People With Disability Australia, the peak national cross-disability body, I also sit on the boards of the Autistic Self Advocacy Network of Australia and New Zealand and People With Disabilities WA, both of which have expressed their deep concerns about the independent assessments, along with the rest of the disability sector. Today I'm speaking as a disabled person, and as a parent, carer and advocate of many years, and this is my own perspective. I generally live in regional Western Australia, on Ballardong country. Today I'm on Wajuk Noongar country, which is less than five kilometres from where Conor Murphy and Kyle Scolari died. Like me, both of those young men had muscular dystrophy; unlike me, they both used a ventilator to breathe. They both died at age 25 in a storm, when a support worker failed to wake up and manually activate their backup generators. Last night I read that the NDIA will no longer fund backup generators as part of a raft of these changes that they're bringing in alongside independent assessments. I don't think that's the only way that people will die under the changes that are proposed to the NDIS.

It's been widely reported that plans to introduce so-called independent assessments—we've been saying 'roboplanning'—have been on the cards for some time. The plans for these changes date back to 2017, and most of the planned changes are still not on the table. There is an absence of solid data or modelling that has been presented to the states, territories and community about the rationale for the misinformation that the scheme is not sustainable. This misinformation comes on the back of a massive underspend in 2019 of $4.2 billion. I've never once heard that Medicare is unsustainable. We have a universal right to health care. Nobody ever says that, when you get cancer, you can't afford to be treated. Nobody ever says that, when you need IVF, glasses or a hip replacement, these things are not sustainable and that you should live in crisis or be deprived of health care. The same goes for disability care; that is one of the fundamental tenets behind the scheme.

I'm unsure why we're even having an inquiry. The entire disability sector is unified in saying that this is a bad thing, and that includes allied health professionals, people with disability and their families, advocacy groups, and Aboriginal and CALD representatives. We're united in saying that this plan is flawed, there has been no co-design and it will negatively impact people with disability and their families. There is not only no evidence that it would be a good thing for people with disability and their families; there is significant evidence before you, provided by many people, that the plan is flawed. Even the premise of the plan is flawed. If you look at the idea of sympathy bias, which is referred to in the Productivity Commission report, it's based on a study of 29 people in 2005 using a discontinued tool in an institution in South Australia. The Tune report has had its independence called into doubt. These are being used as conveniences, and it's misinformation; it is not based on fact.

Others will talk to you about flawed, untested and unproven tools and about issues with qualifications and disabled people not being placed at the centre of the scheme. I want to highlight the issues in the report of Marie Johnson, the former head of technology at NDIA, about roboplanning and algorithms. She has detailed what the issues are, but there are darker elements at play here. The committee should be asking about the trial that took place in 2018 with the Commonwealth Bank and block chaining, about the plan to link all of our federal and state data and what third parties will have access to this, and how transparency and privacy are being disregarded as part of this plan.

Disabled people have seen all of this before. Disabled people, since 2015, under the DSP, have been kicked off the disability support pension through the use of a similar scheme; that is, through the use of job capacity assessments. There have been 270,000 people kicked off since 2015. That was not because of something that the Liberal Party brought in; the Labor Party changed the impairment tables. Successive governments have used it to punitively impact upon people by subjecting them to reviews, which is something that's built into this idea. We've seen all of this before. We know that we are always the first people in line, but people don't realise how close to the edge people are. People are already living in crisis; half of us live in poverty. Depriving people of care and support is cruel and unusual treatment, and this should be discontinued immediately, including the trials.

CHAIR: Perhaps I can lead off. I note that we've been joined at this hearing by Mr Wallace. What consultation has occurred to date with people with disabilities and the NDIA about the proposed changes?

Ms Burnette : I can speak on behalf of People With Disabilities WA. As far as I know, we've had no consultation at all around the independent assessments.

CHAIR: Are you aware of anybody else in the disability sector in WA having been consulted?

Ms Connor : Not that I'm aware of. I know that the national peaks were given information at the very beginning, but there certainly wasn't any detailed information about what this was. Several people have been involved in various focus groups and that kind of thing; I don't think they're going particularly well. The feedback that I've had about the focus groups is that people feel they're largely ineffective and those people have been told that things are just not negotiable, which is not a co-design process; it's people telling you things and giving you information.

Mr Cullinan : A presentation was given to us from what's called the Disability Coalition over here, but that was generally along the lines of, 'There's consultation coming up, but this is what's being rolled out.' So it wasn't really so much a consultation but more information about what's planned to be implemented, even though it was allegedly coinciding with the consultation process; but that wasn't the impression that we got as part of that.

CHAIR: I'll go to Senator Steele-John after this question. Ms Connor, you referred to a lack of data and modelling, as I recall from your statement, about the sustainability of the scheme. Have you been provided with any data or modelling in relation to the sustainability of the scheme, other than what appears in, for example, the quarterly reports from the NDIA?

Ms Connor : No, not at all. The information that I have is that the states and territories have asked for presentation of that data. One of the issues is that the scheme actuary was outsourced a few years ago and actually became the consultant, so there's no way to FOI that information. The actuary are able to build their own black box and present the information but in the way that the NDIA want them to. There is an 'insights and data' page, which is a list of data cubes. There's also Senate order 13, which presents a large dollar amount that is attached to consultants and lawyers, which we don't know, and is included in the total scheme amount. So there's really just no information presented to us as rationale.

Ms Burnette : Perhaps I can just add to Sam's comments about the outsourcing. From an anecdotal lived experience, my husband and I are both on the NDIS. We had our plan review in December last year. We both underwent significant pressure from the planner at that time to have an independent assessment, despite my having a permanent disability and my husband having a chronic progressive disability that will never improve. Of course, I pushed back against that requirement, but the planner informed us that the information they were being given at Mission Australia was that they were to encourage all participants to have independent assessments.

Senator STEELE-JOHN: Thank you for the evidence that you've given so far. I wonder if I could potentially get Sam—or, indeed, anyone who wants to—to chip in on this. We've heard a lot of concern around the sustainability argument that the government is making and what rapidly seems to be the non-existent case for there either being a long-term sustainability question or independent assessments being the solution to any sustainability issue that exists. I'd really like any of you to expand on that from your perspective as either individuals or an organisation generally. Maybe I can start with you, Sam.

Ms Connor : To kick off, it's well known that, for disabled people, you hear people saying 'choice and control' over and over. When we do have choice and control, we can do things cheaply. The things that cost money are repeatedly going back to court to challenge your plan because it's insufficient and repeatedly having to go and re-prove the disability that you have. To have a permanent disability that impacts you every day is a requirement to get into the scheme in the first place. We shouldn't have to keep retelling our story and having to go in and prove that we're disabled for a scheme that we've already proved that we're eligible for. We entered the scheme in a particular way, and we had to prove that we were disabled to get into it, so this makes no sense at all. I think the sustainability argument hasn't really even been discussed, let alone proved. It's just something that has been trotted out at the last minute about this being why we can't have nice things—I don't know—and really no rationale has been presented around why people shouldn't have reasonable and necessary support.

We hold grave concerns about the leaked documents that were around the changes to the legislation in which they propose to remove completely the part that talked about 'reasonable and necessary'. This was based on disabled people's lives and their individual support needs; and, as you know, your own lives are dictated by what your life looks like. If you go to school or to church, or if you have a family or other disabled family members, it was supposed to be an individualised scheme that placed us at the centre. This completely changes all of those ideas, and it subjects us to roboplanning with an algorithm that literally looks at our impairments before we have any kind of conversation about what our lives look like and what we need to be able to reach our goals. So, yes, it's a huge concern.

Ms Burnette : I think another of the challenges with the NDIS has been the lack of intersectionality with other sections of support services; health and housing have operated as silos with the NDIS. The cost savings are clear around getting people out of hospital earlier and into supported services and preventing further co-morbidity, which would also force people back into hospital. I think, concerning sustainability, they're looking at it from a very narrow, individual perspective rather than looking at the bigger picture where actually, if you support people, they can be productive, they can work, they can stay well and, therefore, they're not likely to lean on other systems.

Senator STEELE-JOHN: Brendan, go ahead.

Mr Cullinan : I would just reiterate those concerns. From an intersectional perspective, there's been a lack of transparency, which I think does cause those real concerns. I think that, whilst that sustainability discussion has been thrown around, there has been no real clarity around what that actually means; therefore, from a sceptical point of view, it's perceived as being a cost-cutting exercise.

Senator STEELE-JOHN: Yes, absolutely. In your submission, you detail quite thoroughly your contention that the consultation process and paper produced by the NDIA are in direct conflict with the act in relation to the link between participant goals and their supports. I wonder whether you might be able to elaborate on that for us.

Mr Cullinan : Yes. I suppose it gives some practical concerns about how that transpires. I had a discussion just recently with a family who have been through the actual trial process about what they experienced and, I suppose, the connection between the process and their actual situation. First of all, they felt that the particular process was a tick-the-box scenario and, through the actual assessment, the answers, I suppose, were trying to fit into the questions provided in the actual assessment tool. There were some particular concerns that, with quite extensive care being required by this particular individual in their situation, the actual information provided by the parents was interpreted by the assessor in a completely contrary manner. For example, where the parents saw a particular issue as a big problem, the assessor interpreted it as being a little problem. So, with the connection, I suppose, between the process and what ultimately would lead towards reasonable and necessary goals and aspirations with what is required, there's obviously a concern and a major issue about the disconnect between those things that may ultimately lead to a decision being made that has not taken into consideration a person's individual circumstances and what their actual aspirations and needs are.

Senator STEELE-JOHN: Absolutely. Your submission then goes on to talk about the centrality of goal-making in the NDIS process. I know that Ms Burnette and Ms Connor were both seminal advocates for the scheme's initial introduction. I'm really concerned, I have to say, that the further we've got into this inquiry, the clearer it has become that roboplanning or independent assessments—whatever you want to call it—is actually just a gateway to a much larger change that has received less attention in terms of the way that participants experience the scheme. I'll go to Ms Connor first. Would you be able to just take us through how you think the reversal of this goal-creating process will affect the participant experience?

Ms Connor : Absolutely. I could probably just use myself as an example. I'm a clearly middle-aged woman with six children and two grandchildren who lives in the country and has been a scout leader for 20 years and who has probably an ordinary life in some ways and an unusual life in other ways. I'm still a person who generally does whatever they can to do housework, but there are particular things about my life. I fly to places and do presentations in other states and, quite often, I need flexibility in that I need to get somebody to fly with me and to assist me. To have the flexibility of being able to get somebody to stay with me for a couple of days is a tricky thing, especially if you're staying on the couch at a friend's place and you're expecting a support worker to do that. As to some of the ways in which I've used my funding in the past: we've just had Anzac Day, or we didn't have Anzac Day; we had driveway Anzac. For the last 20 years, I've been out with a pack of 10-year-olds up on a hill. But the hill is a key thing because I'm a manual wheelchair user and the hill is not accessible to me, so I would employ a disabled scout leader, another scout leader, and pay them out of my funding so that they would also be able to stay up all night and not stand out like a Baptist care kind of worker with a polo shirt on. They'd be somebody participating in the Anzac Day parade in my regional town, and they would be a person whom I was able to pay for assisting me all night. They'd know what was up with saluting and doing those kinds of things.

That's something that's quite unusual, and you can't put that into a diagnostic thing that says, 'Okay, here's your test in making a cup of tea; we know that you're a person who has ADHD and who is autistic and who has limb-girdle muscular dystrophy type 2I'. The tests that they're employing can't encompass any of those things. As part of the plan, there is the need to take a person aside, not in our presence, to have a discussion with them about our supports. There are some things that I'm not going to disclose to that scout leader who pushes me up the hill. I was a victim of childhood sexual abuse for many years and an incest victim, so I have a bunch of things that involve a psychosocial disability, and I don't want to disclose the particularities of how those things actually affect me as a disabled woman.

I'm very wary of strangers; having strangers come into my house is terrifying for me, and it's the same for a lot of women. So it's these sorts of things. It's changing that around and saying, 'Well, we're just going to look at your collection of impairments, such as the fact that you use a manual wheelchair'. The only thing that they look at is my primary disability, and that doesn't encompass what my life looks like: what visiting my children or travelling for reasons of advocacy and to participate in community and voluntary activities and serving my community, which includes a disability community, looks like. So it would be a dire thing for this to happen for me and for other people.

Senator STEELE-JOHN: Lisa, do you want to add to that?

Ms Burnette : Yes. Further to Sam's comments, my husband and I currently self-manage our plan completely. I am extremely frustrated by the concept of having to share and retell our stories to new people on a continual basis; we already have that with my husband's insurance, and I find it extremely intrusive. I feel that the services we get from the NDIS have worked well for us because we do self-manage and largely have been left to our own devices to manage our plans within the parameters that we've been given and we can allocate that funding accordingly. One of the biggest changes was moving away from potted services, where I had to be home when the cleaner came and I got a different cleaner each week. An agency was running it, so it was extremely agency-driven, and it revolved around the agency; whereas now the services that I have revolve around us and what we need as a family. As a result of that, I'm working four days a week, I'm on two committees and I have two children at school. I think it's important to allow us to manage our own lives. I'm very concerned about the changes that I'm hearing of such as our no longer being able to be the driver of managing our own funding. For me, that would take away all that privacy and autonomy. I think, for me, the key is autonomy and being able to be independent.

Senator STEELE-JOHN: Absolutely. Mr Cullinan, do you have anything to add to that from an organisational perspective?

Mr Cullinan : Not really. I suppose I'd just voice some of our concerns. Currently, regarding the range of work that we provide from an advocacy perspective, 45 per cent is tied up with the NDIS, helping people through the particular process and the burden of the administration side of things; and it's the same with DSP. I think that anything that's going to create that extra burden and trauma, particularly where it can create further barriers and exclusion, is obviously of grave concern for us.

Senator STEELE-JOHN: I'm aware that I have spoken for a while, Chair. I do have two other questions to ask, but I just want to pass the mic to other committee members and then I'll come back, if that's okay.

Senator CAROL BROWN: Thank you for your submissions and evidence so far. In your opening statement, Mr Cullinan, you welcomed the new minister's commitment to pausing the rollout until the trials are completed. One of your recommendations is that the trials be robust and transparent. Do you believe that is the case now, or should the minister go further, not just pausing the rollout but looking at how the trials are being undertaken?

Mr Cullinan : Our preference would be to look at why the trials are being undertaken. With there being so many grave and consistent concerns across the sector, it would be a good time now to revisit the whole trial process to see whether it is appropriate and to look at engaging with that in a true co-design process.

Senator CAROL BROWN: Ms Connor commented on this in her evidence: why are we continuing with the independent assessments when everybody involved in the sector, including academics, advocates, participants and supporters, all believe it is the wrong way to go? The inaugural scheme chair indicated that it was a disgrace and should be scrapped immediately. Do you support what the inaugural scheme chair said—that it should be scrapped immediately?

Ms Connor : Absolutely. I have heard Bruce Bonyhady referred to numerous times as the 'grandfather' of the scheme. He is one of the architects of the original scheme. So one of the people who built the scheme has said, 'This is a bad idea'. Why would those discussions, which were not had before, have commenced in this plan of action? I understand why; I think it is just a punitive cost-cutting measure. I hope they understand the impact on disabled people's lives, because it would be evil to carry out measures like these in a punitive way for people who are already often on the edge of life, not just medically and clinically, but in terms of living with poverty and disadvantage. We fought for this scheme to be able to crawl out of that. We have barely started to crawl out of that; the scheme hasn't been working for us. So, to turn that around and not listen to people like Bonyhady and others is a travesty; it should be assessed immediately.

Mr Cullinan : Obviously, as we have identified, improvements can be made. We all agree that improvements can be made. It is how we go about consulting, engaging, co-designing and looking at ways to address the concerns. Rather than being selective about some rationale to some particular model and then putting that out there, saying, 'This is what we are going to be putting in place; what are your comments?' we should be saying, 'There are concerns; how do we work collaboratively to address those concerns in order to make it more accessible and easier for people to navigate through the system to get the care that they deserve and are entitled to?'

Ms Burnette : It is almost as though they have seized upon one small issue in the scheme, which is the challenge for people who have less clear disabilities and the funding associated for those people to get assessments done in the general community and then come to the NDIS to register, and use that as a justification for making much broader, sweeping changes. There is still the issue of the NDIS needing to support people to get into the scheme in the first place. My husband and I have pretty clear-cut disabilities; it would be a waste of money to do an assessment on us. Obviously, there will always be cases where people need support in having assessments to then be able to justify getting onto the scheme. But then to drag that out across everybody on the scheme, and on a regular basis to boot, seems like an extreme reaction that has not been properly process mapped out as the correct solution for that one small issue.

Senator CAROL BROWN: Going to the issue around sustainability, there has been some highly publicised reporting of leaks; these changes look more like cutting money for savings than making changes to some of the issues the NDIS has in terms of equitable funding. How do we ensure that the NDIS is sustainable and equitable?

Ms Connor : Just run it properly—that would be a great start. Look at the amount of money that is spent in lawyers' fees and people continually going to AAT. Most people do not have the resources, emotional and fiscal, to be able to go to court. Most people don't have lawyers and are representing themselves. Advocacy is underfunded; there are huge waiting lists and people are snowed under. If there were a genuine co-design with a deep compact and understanding between government, the NDIA and disabled people and their families, we would have been able to get it right. Also, there needs to be a genuine understanding of what our lives look like so that we can stop looking at this as some kind of a gift that needs to be limited at every opportunity rather than as an investment scheme that would enable us and our family members to go to work and support the economy. There is not that understanding that the scheme was supposed to be an investment scheme that would enable us to return not just to the economy but also to society and the community; that has been missing. If we got back to basics and stopped this and said, 'Let's go back to brass tacks, and start having that deep engagement with the community and regain trust', that would be beneficial.

Ms Burnette : Also, there is already an element of independent assessment occurring in the scheme as it stands, particularly around assisted technology. When I joined the scheme it cost $1,200 for an occupational therapist and $175 for my first shower chair, which was one that I had been using for 20 years. That is just an example of the ludicrous sorts of fees that are now being charged to assess people for items they have used their whole disabled lives. That has been my experience over the last five years on the NDIS repeatedly. Every time I need a new piece of equipment, I am subjected to a rather long occupational therapist assessment. For the first time in my life I have an occupational therapist, which is a good thing, but it is also indicative of the fact that I still don't have choice of control. I still have to go through an OT and be fully assessed and spend quite a lot of the scheme's money doing that just to get the item of equipment.

Ms Connor : I don't. I am self-managed and mine was $30 online, Lisa, so there you go.

Ms Burnette : I always regret going down the correct path and think that instead I should just pay for it myself.

Senator STEELE-JOHN: Ms Burnett, could you repeat that? You had to undergo an occupational assessment, for which you were charged—

Ms Burnette : I was charged $1,200.

Senator STEELE-JOHN: You were charged $1,200 for a chair that cost—what was it?

Ms Burnette : It was $175.

Senator STEELE-JOHN: Wow!

Ms Burnette : They then thankfully brought shower chairs back into the level 1 category, which means that you are no longer required to do that. So I can see that they are picking these things up and making improvements, but I feel like they kind of missed the point of the whole scheme from the outset.

Ms Connor : Changes were released yesterday—I don't know if anybody has seen them yet—to the ILO scheme and a whole bunch of stuff around supports being funded more appropriately through the NDIS than through mainstream purses. There are things like, 'We won't pay for you to have an off-road wheelchair because you have dirt roads—it is the shire's responsibility to provide footpaths and that kind of stuff'. That has all come out. But the ILO capping and information that came out on a public holiday yesterday is a bit terrifying. There is very clear delineation around things and capping and rules which are going to negatively impact on people as part of this raft of changes. For somebody who has one arm, it is going to be cheaper to buy them a tumble drier than to pay for a support worker for the next 10 years to hang out their washing. It is just basic economics. Having an argument where you have to go to court about a $400 tumble drier from Harvey Norman or the Good Guys is out of bounds. It is ridiculous that we have to argue against our own interests but also the interests of the government and the interests of sustainability and now extra rules are being put in place. The whole thing is ludicrous.

Senator CAROL BROWN: Perhaps I can go back to the concentration issue. Since the change of minister, has the PWD asked for or been offered a meeting with the minister?

Mr Cullinan : With the current federal minister, not at this stage. We have sent a letter to Minister Reynolds seeking a meeting. We have a meeting set up with our state minister but not the federal minister at this stage; we are still waiting to hear in response to our correspondence.

Ms Connor : For PWD, I have been advised by Dr Ben Gauntlet that he was going to speak to Linda Reynolds. I think Senator Steele-John also had a meeting with Minister Reynolds about catching up, because they are both in WA, but I have had no contact yet and neither has the organisation, as far as I am aware.

Senator CAROL BROWN: So here is an opportunity: what message would you send directly to the minister about the reforms?

Ms Connor : Stop the trials immediately to regain the confidence of the community. It would be the clever thing to do politically, as well. We are a big group people—the big group of people who lobbied successfully for the scheme. In order to regain community trust and reset this thing, you need to stop the trials and then start talking right at basics about what genuine co-design looks like. If this is actually about the problem of scheme sustainability, then be transparent and be accountable and say, 'This is where we are at; if there is a genuine case for making changes to the scheme, what do you think?' That should have been done at the outset. In order to regain our trust, that needs to be done. It is not just about consultation in terms of having a lot of meetings and listening to people; it is about taking action and putting those measures in place to regain our trust and make sure that we put the brakes on and do things properly.

Mr Cullinan : I concur with Sam's comments. The principles or framework behind the current trials appear to be flawed and we are going to have to speak to it. There needs to be a reset, going back to a lot of the issues we are trying to address here and what is the most appropriate way to address those concerns in a true co-design process. Continuing with the current trials can almost be seen, as I have said, as a pause and based on how the communication has been provided in the past, where there has been this view that it is going to be rolled out. If we look at previous documentation and meetings that I have been to, this is what is proposed but yet to be implemented. It does need to be a complete reset and a revisiting of the principles behind it, while we are doing this particular process, and making sure it is appropriate.

Senator CAROL BROWN: Thank you.

Ms Burnette : Finally, there is the question of communication to the LACs and other agencies around that as well, recognising that they are the face of the NDIS; so what they are being told is then what we are being told.

CHAIR: Thank you. Senator Steele-John, I think you have another question.

Senator STEELE-JOHN: Yes, very briefly. I think that there is still something vital that is being missed here, which is the question of the appropriateness of the tools that sit at the heart of the independent assessment process to be either used to attain somebody's budgetary funding need or, indeed, combined in the way that they are being proposed under the scheme. These are concerns from Mr Bonyhady. I would like to know from you, Ms Connor, from you, Mr Cullinan, and also from you, Ms Burnette, having potentially both used them and been subjected to them and having seen the proposal in detail, if you share those concerns and, if so, why.

Ms Connor : I absolutely share those concerns. I've been through the whole suite of tools. I've listened to clinicians and I've read the literature and read all the information around the development of the tools. The tools are untested to determine funding amounts, and this is not only unethical but dangerous. It has the potential to retraumatise traumatised people. Part of the NDIS is that we have people with trauma—not just people who have come in with a psychosocial disability but people with trauma—and they're not trauma-informed tools. People are coming in and asking us intrusive questions. I regularly go and stay in mental health units—this is the thing—and, when I go into a mental health unit and have somebody actually speak to me about those things, I'm generally incoherent and can't speak because I'm autistic. So they're not going to work if you have a person who is dealing with trauma anyway or who has any sort of medical trauma. I think all the literature around this is relatively clear, and the academics have been very quiet on this because they're subjected to funding restraints—they're funded by government—but there's nothing to say that this will work and that this will be appropriate or will result in good outcomes that will result in any kind of understanding by strangers about what our funding needs are.

Mr Cullinan : I would just concur. As I've mentioned previously, with the particular example that I had, speaking with the parents last week, they felt the process they went through wasn't really applicable and didn't really take into consideration the personal circumstances of their particular son. They felt that the assessor was trying to find answers to fit the questions, as opposed to really understanding the individual needs, and where there was, say, a misinterpretation in relation to the assessor and how they were using the particular tools. So that is a grave concern.

Senator STEELE-JOHN: Mr Cullinan, just to clarify, in your submission you said you spoke to members of your organisation who have experienced independent assessment. Would you say that independent assessments, the trials that are underway, are currently causing people harm? Is this a harmful process for people who are experiencing it?

Mr Cullinan : From what we're hearing, yes, the process that is actually used is causing, I suppose, trauma due to the fact that people aren't really understanding the process and aren't comfortable during the actual process; so it is causing concern, bearing in mind that this is an opt-in process by the actual trials. But the people whom I've spoken to who have undergone the process, I suppose, do have concerns about the legitimacy of the actual process and whether it is going to provide accurate information about their circumstances.

Ms Connor : Perhaps I could just mention that I had an assessment for adult autism a few years ago because I was being put in autism spaces and recognised as a leader and I thought I should go and get a piece of paper to back that up. Part of that assessment was that I had to interview my family. Both my parents are dead. I'm an orphan, I'm 53, so I had to ask my children if I masturbated or used porn regularly, which were two of the questions that I was asked during this assessment. You can imagine what that was like and the rest of the questions. I delivered it to them on Christmas Day and they all stopped at the same questions at the same time and raised their eyebrows at the same time. It was a really distasteful thing.

Senator STEELE-JOHN: I'm sorry, you were asked those questions from the tool? Which tool were you assessed with?

Ms Connor : It must have been Vineland, I think. It was an autism assessment which Vineland is part of. This is a standard question about behavioural stuff. They were two of the questions in the handout that I was given by my psychologist in Western Australia, who is Julia Charkey-Papp. One question was about masturbating and the other was about the use of pornography and whether I had an obsession with pornography. To their credit, none of my children asked me those questions; so that was good. But we shouldn't be subjected to this in terms of having an assessment for a scheme where we've already proven that we have significant support needs every day and that we have permanent disabilities. This is just wrong.

Senator STEELE-JOHN: So these are the questions that a stranger is going to come into people's homes and ask? That is outrageous. Thank you very much. I'm aware that we've overshot our time, Chair, so back to you.

CHAIR: Ms Burnette, Ms Connor and Mr Cullinan, thank you very much for your submission and for coming online and discussing it with us today. We appreciate it. Thank you very much.