Chapter 6

What people with disability and their families told us

6.1
This chapter outlines in greater detail what people with disability and their families said about independent assessments, in addition to what has already been noted elsewhere throughout this report.
6.2
The chapter begins by examining what people who went through the pilot program/trials said about their experiences. It then focuses on some of the specific concerns that people with disabilities and their families raised in evidence about independent assessment—that is:
Their fear and anxiety about the assessment process, meeting with a stranger, and how assessment results would be used in decisions;
That independent assessments would not be accurate for people with fluctuating or episodic conditions;
That independent assessments would not be transparent or subject to review; and
Their agreement that the NDIS needs to be financially sustainable, without using independent assessments in the model proposed.
6.3
The chapter is not intended to provide a comprehensive discussion of all the issues that people with disability and their families said in evidence; rather, it provides an overview of some of the common themes. It should be noted that evidence from people with disability and their families is used throughout this report, and that there is some overlap between what people with lived experience and their families said, and what experts said (as noted below). The committee encourages interested readers to view the submissions published on the committee’s website and also evidence provided in public hearings to further supplement the summary below.

What people who went through the trials said

6.4
The committee heard from a small number of participants and their families who went through the pilots/trials of independent assessments. Submissions from advocacy groups and peak bodies also highlighted the experiences of some people who had taken part in the trials. Examples follow.
6.5
One participant with physical disability caused by post-polio syndrome submitted that they had recently volunteered to take part in the pilot 'and regret to say that my worst fears were realised'. This participant had concerns that:
The assessor had limited experience with post-polio syndrome;
The assessor asked a question about sexual activities, which the participant found to be 'invasive, inappropriate and offensive, especially as there was no forewarning, nor was I given an option not to provide an answer';
One part of the assessment, which took 40 minutes, 'did not apply to my circumstances and was a considerable waste of time';
The participant considered that the tests and questionnaires that they undertook were often impairment, rather than function, focused; and
Questions did not provide a full functional assessment of the participant's disability or allow the participant to provide context (for example, the participant stated that they have 'severe' difficulties washing their whole body, but the question asked did not allow clarification on how the participant had adapted to be able to do this).1
6.6
Mr Jeff Smart, a participant who was a former senior Commonwealth public servant, provided a submission and also gave evidence at the Canberra hearing on 20 May 2021, about his experience in the trials. He described his independent assessment report as 'inaccurate, incomplete and irrelevant'. Specific concerns he raised included:
The assessor was a clinical psychologist who had 'very limited' understanding of Mr Smart's disability (caused by Parkinson's Disease);
The assessor asked Mr Smart to make a cup of tea. 'Knowing that this would not display my impairments, I also showed the assessor how I peeled and grated a vegetable. The report states that I used the peeler slowly and with intent… Though I demonstrated and made the assessor aware of…classic and easy to observe Parkinson's motor symptoms, they are not recorded in the report';
The report stated that Mr Smart was both 'highly articulate' and that his 'communication skills are moderately low compared to others' of his age;
The report recorded the motor skills assessment area as not applicable;
Mr Smart could not recall any questions in the assessment that covered the benefits of early intervention for Parkinsons disease, including existing early intervention therapies from which he was benefiting;
Mr Smart found the length of the assessment 'mentally and physically' exhausting by the three hour mark (it lasted for almost three and a half hours); and
Some questions were irrelevant (e.g. questions asked of his wife that concerned autism symptoms).2
6.7
Ms Teena Roberts told the committee at the same hearing about her seven-year-old grandson's experience in an independent assessment, which was carried out via a computer:
The first thing the assessor did was ask Thomas to read a book to them and to draw. Thomas went into total meltdown. I was there as well at the time, to look after a couple of the other kids. We calmed him down enough. Thirty minutes in, the assessor says, 'We don't need you anymore, Thomas.' Thomas is sitting there, saying, 'Did I do something wrong? Have I hurt someone? What's the problem?'
6.8
Ms Roberts stated that her daughter stopped the assessment halfway through the next stage, an interview, because of concerns about the assessor's expertise in autism and working with children, and because she felt that the interview questions were not relevant. As a result, Ms Roberts suggested, her daughter was 'not sure whether her funding's going to be cut again because she cancelled the trial halfway through'.3
6.9
The parent of a participant who took part in the pilot informed the committee that their assessor was 'professional, had a good personality, and was calm and I could have a conversation with her easily'. However:
The assessment took four hours over Zoom. 'It was tiring and tedious, and difficult to answer questions that in the end just blurred from one into the other. I am used to Zoom calls, but not to this intensity and thought required behind every answer.'
'I received a call beforehand to schedule; the suggested time was 7pm ([my son] would be in bed). They did not know anything about him, including for what reason he is on the scheme. We commenced at 4pm. They thought he was female.'
'If the assessments occur in the same manner as my son's and with the consequences as envisaged, I believe that the risks (emotional, physical and “sudden removal” from the scheme) to the participant and their families outweigh any benefit (apart from financial) to the Commonwealth… [Y]ou would not let a junior doctor operate on a critical organ, why would you let a junior OT for example write a report that would remove someone from the NDIS?'4
6.10
The parents of a participant who took part in the NDIA pilot of independent assessments, while positive about some aspects of the experience, suggested that 'box ticking' is inadequate for complex issues. They felt that the 'assessor spent very little time observing our son' and argued that an 'assessor cannot possibly get a true picture of someone's ability after observing for less than 20 minutes'. Noting that they had previously engaged a speech therapist, a physiotherapist, a psychologist and an occupational therapist to make recommendations for their son, and that they had not yet received a copy of their assessment, they were of the opinion that:
...one 2.5 hour interview with an independent assessor is not sufficient to get a full understanding of a person, or give the NDIA enough information to make fair decisions related to funding.5
6.11
While the parents noted that the experience was positive, they suggested that independent assessors should have experience in the disability type of the participant they are assessing:
Our assessor was an experienced OT who shared with us that her son had a disability. Though nothing like the disability of our son, she had the understanding as a parent of communication difficulties and their effect, and we felt she could understand our son. We were happy with her independence, qualifications, training and expertise.
We feel that it's extremely important, though, that each independent assessor…have experience with the type of disability they are assessing.
Independent assessments have a much greater chance of being accepted as fair by people with disability/their families, if the assessor is experienced in the type of disability they are assessing.6
6.12
The parents suggested that because of the risk of misinterpretation, participants and/or their nominees should be able to review assessments. They argued that providing participants and/or their nominees with an independent assessment report by a particular date would improve the process:
We have…found in the past that people assessing our son's disability can misinterpret what is said to them, so it's important that people or their nominees have the opportunity to review assessment results, and challenge anything that is incorrect.
…In general, being provided with a date when a report should be received, and having that date adhered to, as well as allowing feedback, will really help people and their families feel satisfied with the assessment process, and reduce stress involved in the process.7
6.13
At the hearing in Geelong on 4 May 2021, Ms Jaimee Witcombe, a participant herself and also a parent of two participants, told the committee about her experience going through an independent assessment in the pilot, and argued that context and background information were needed to inform 'an appropriate and effective funding plan':
If you don't know what a participant has come from…from a literal and historical perspective then you cannot understand how a participant may need different kinds of supports, contingencies and funding. In this pilot assessment, administered by an OT who had worked for three weeks in aged care and who had no experience in disability, there…were one or two vague questions about my wellbeing, with no scope for psychosocial disabilities or complex mental illness. There was no provision to consider my own caring load and how that impacts on my wellbeing. There was certainly no comprehension of how to engage with me to ensure my wellbeing was not impacted by the process.8
6.14
Ms Witcombe explained that she had participated in the pilot program because, 'while I find the review and planning processes personally damaging, I felt a responsibility to try it and provide useful and honest feedback…and maybe become part of the solution'. However, after providing feedback within the meeting:
I was informed that all feedback was for internal purposes only and would not be provided to the NDIA. I was asked if I wanted a response to my feedback from the contracting organisation, and I replied that I did. It's been just under eight weeks since I took part in the pilot and I have received no response from my feedback. I received one email which contained raw scores of the assessment tools with no explanation or method of interpretation…
Participants are here taking time out of their lives and often using the last of their mental, physical and emotional capacity to help the NDIA and the government understand and respond to our concerns. We have offered feedback, which has been largely ignored. We take up opportunities to contribute, which turn out to be misrepresented and which misuse the goodwill and valuable time of participants. Mostly, the agency seems deliberately blind to its role in eroding public faith in the scheme.9
6.15
At the Melbourne hearing on 23 April 2021, Ms Grace McLoughlain, a participant with psychosocial disability, told the committee that she took part in the pilot project because 'I am terrified of independent assessments. I'm scared that I would not be heard, that my needs would not be met and that my funding would be cut'. As a result, 'I thought I'd do a practice run where it wouldn't impact my funding'. She stated that she found the three hour assessment 'gruelling and exhausting'. Further:
I did the assessment in a local park, which wasn't ideal. I did it in a park because it was the most confidential space I had. I had just moved into a new share house that didn't have super private spaces, and I didn't want my new housemates hearing about the nitty gritty of my mental illness. There were no alternative options like having it at the office of the independent assessor'.10
6.16
However, the committee also heard that some chose not to take part in the pilots/trials for independent assessments. For example, Ms Jane Wardlaw, a disability advocate and participant, told the committee that she knew of three people who refused to be part of the independent assessments trial.11
6.17
The mother of an participant with autism told the committee that her family were invited to participate but chose to decline because:
…choice, control and personal goals are not taken into account. Second, being under scrutiny to see how your disability affects you has a negative impact on the mental health of a person with a disability. Many people with disabilities already feel less because of the daily scrutiny they receive in the community. Third, we have already undergone an extensive process with qualified health professionals to be diagnosed with the disability… Fourth, we have already met the NDIS's extensive eligibility requirements, and having to be reassessed for eligibility on an ongoing basis is degrading, as your disability does not disappear over time. And fifth, we have completed several tick-a-box style assessments as part of the planning process with NDIA staff over the years, and all have not been relevant to a neurological disability, and have resulted in reduced plan funding due to this.12

As reported by organisations

6.18
Organisations also reported to the committee stories from participants who had been through the trials. For example, the Brotherhood of St Laurence in its submission outlined the experiences of a participant, who was also a Local Area Coordinator (LAC), who took part in an independent assessment. The participant flagged the following areas of concern:
The participant was given 18 hours' notice to do the assessment, and had to cancel a work commitment as 'I felt like I needed to be there' and there 'was no suggestion of we could do it another day';
The assessor began by telling the participant that this was 'her first-ever assessment';
The assessor told the participant that she needed to see them doing something around the house, but the participant had not been aware of this prior and so was using a desktop computer;
The assessor's supervisor suggested that the participant make a cup of coffee for the physical observation component of the assessment 'but I said they wouldn't see how I did it. They asked me to get a book from the shelf, and said that's OK, but the paperwork said 20 minutes observation';
The assessor had no information about the participant's disability except that it was a physical disability;
Questions were asked about the previous few days 'but we have been in lockdown. Last 30 days, last 12 months are during COVID. They don't give an indication of what I can do';
The participant found some questions, such as about sexual function and continence, unexpected 'with no warning and no introduction';
'There was no teasing out to get the right answers, and that's a big part of it. Literally got the question and nothing else'; and
The participant stated that 'I've always felt there was a need for consistent individual assessment for people to get access, but this is not it'.13
6.19
South West Autism Network stated in its submission that it was 'aware of at least four participants in the current Independent Assessment trial who spoke out about their negative experience, and have not been provided the feedback survey'. It suggested that there would likely be many more, 'including individuals who decided to cease the assessment part-way due to their negative experience'.14
6.20
South West Autism Network also flagged inaccuracies that it submitted had occurred in a report provided following an independent assessment of an autistic adult taking part in the trials, including that the report incorrectly stated that the participant did not exhibit behaviours with the potential to harm self/others. South West Autism Network suggested that one section of the report had 'been cut and pasted from another assessment'.15
6.21
Ms Nick Avery from South West Autism Network further told the committee of one case involving a non-verbal autistic child, in which they 'got the entire way through the independent assessment, and at no point did the independent assessor work out that that child was non-verbal'.16
6.22
Occupational Therapy Australia suggested that 'there have already been instances of complaints against Independent Assessors being made to [the Allied Health Practitioner Regulation Agency] as a result of assessments being conducted' in the pilots.17

What people with disability and their families said about independent assessments

6.23
Through submissions, evidence presented at hearings, correspondence and the words of disability advocates interviewed in the media, the committee learned that Australia's disability communities had significant concerns about the introduction of independent assessments. While those concerns are too numerous to be noted comprehensively here, there were some common themes, as outlined below.

Fear and anxiety about going through independent assessments

6.24
The committee heard that many participants dreaded the thought of going through independent assessments. Many witnesses with lived experience of disability were in tears while giving evidence before the committee and even, in some instances, distraught, whether because they feared meeting with a stranger, they had already gone through lengthy and sometimes difficult experiences in accessing and navigating the NDIS, or they were worried that they would lose funding as a result of their assessments.
6.25
For example, Mr Simon Edwards, a participant, shared his story of being a participant who had experienced life-changing results from the NDIS after decades of limited support before the introduction of the NDIS. He told the committee that:
Yes, independent assessments will fail. This story was shared today because we're about to make similar mistakes. Literally tens of thousands of people are going to be told 'no' by independent assessors…We have learnt nothing if we bring these things in…It's imperative that we know that these nuanced supports are important.18
6.26
Mr Jeremy Le Roux, a participant with 'lived experience of mental distress' who, before COVID-19, had worked as a peer support worker in adult mental health at St Vincent's Hospital in Melbourne, told the committee that:
When a person with a lived experience of mental distress undergoes an independent assessment, they face the real prospect of retraumatisation and the possibility that they will lose access to funding and the critical supports that they need to participate in society and lead a meaningful life …The NDIS has a responsibility to ensure the wellbeing of people accessing the scheme and its participants.19
6.27
Other participants and their family members expressed similar fears about going through a brief independent assessment and the impact of its results on their lives, saying, for example:
'Nothing about independent assessments is positive for a person like me. It was my ongoing relationship with all of my doctors that meant they were able to identify and act on their concerns…I'm very afraid that a doctor who doesn't know me and doesn't have highly specialised skills…will incorrectly diagnose me, after I've been through so much to determine what my disabilities are…I'm terrified that, even if I don't lose access to the NDIS, my plan will be changed and it will not reflect my needs… The NDIS is imperfect but these changes will make it worse. We're vulnerable and we face enough hurdles as it is. Please do not hurt us.'20
'If the independent assessments are introduced, I will be asking for an exemption, but I'm worried that the NDIA will not grant many exemptions…I feel like those of us with invisible disabilities already struggle a lot getting our needs met.'21
'My son and I are participants, and our families have been experiencing a heightened level of stress and anxiety due to the standardised testing announcements and rollout. We feel that we and our loved ones will become a number and lose our humanity.'22
'My daughter has me as an advocate, so actually I'm not as concerned about the process for her as I am for others. Those who cannot self-advocate are at extreme risk.'23
'The NDIS is our lifeline. We're talking about our lives. I feel threatened by these independent assessments. I'm scared about the future.'24
'I agree there needs to be changes to the current system. For us, the current process has caused an enormous amount of stress and anxiety. [However], [u]nder this proposed model, I would see my son losing significant funding because of his answers and his inability to understand the questions correctly. The reduction of funds under this model would have enormous impact on my son's ability to continue to live independently...This new independent assessment model is taking us back 10 years to the deserving and the non-deserving…'25
'My daughter is 35 years old with high-complex needs. The NDIS has actually been a game changer for her…She has received funding that, for years, she didn't receive…My fear of independent assessments is that my starting of that will now be lost. I have put so much time—everyone has—into getting it to work again. And, of course, not knowing how it will pan out is a huge concern, just by not knowing.'26
'This stranger, and this three-hour block, frightens me. Having unequipped healthcare professionals complete these assessments feels like a nightmare come to life…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…This is, quite frankly, in my personal opinion, a very inhumane way to treat disabled people.'27
'As a participant, as an adviser to the ACT government, as somebody who is chief executive of NDIS registered providers supporting 200 people with disability and their families and as somebody who for two years worked for the National Disability Insurance Agency to help launch the scheme 10 years ago: very simply, nobody, nobody is putting me in a box and giving me a score.'28
6.28
Mr Felix Kaesler, a single parent of three children with autism, who was also an ADF veteran, told the committee about how much the NDIS was 'life changing for all of us' and allowed him to work full-time and no longer 'live in poverty'. He stated that he was worried about the following:
'If we did independent assessments, [my children] would each be assessed as an individual and nobody would look at the impact of how I as a sole carer would deal with three like that.'
'It's really hard when someone asks you a yes/no question and says, "Can your child brush their teeth?' I say, 'Yes, they're great. On a good day they can. But on a bad day, the sensory issues around toothpaste and the taste of mint means there may be a whole meltdown over brushing their teeth." Like a lot of other people have said, on a good day you may not look like you have a disability.'
'My worry is that with independent assessments they'll come and see our family situation and go, "Wow, they're doing really well. They don't need this." All the supports get taken away. I can't work anymore. We go back into poverty. That's my fear. It's really hard. It was so hard to get on the NDIS. It took me 18 months.'29
6.29
The father of a participant with Prader Willi Syndrome noted the stress that the independent assessments process could cause:
Regardless of how you develop/structure it, implementing independent assessments of people such as my son who has a syndrome that is lifelong is not necessary and increases feelings of stress and uncertainty regarding the ongoing funding support he requires…My son reacts adversely to anyone that he does not know well, particularly someone reviewing him [or] talking to/about him and this would stress him out and make any assessment worthless.30
6.30
One participant with autism observed that meeting an unfamiliar assessor who would ask personal questions may be problematic for some participants with autism:
When I meet someone new who asks personal questions sometimes I find myself unable to speak—this is a particular issue as I don't have family to advocate for me. I am not alone in this issue—other people with autism I know have the same issue which may make an assessment with a stranger inaccurate.31
6.31
Another participant suggested that independent assessors contacting participants' health professionals would reduce 'the burden on the participant', particularly where a participant is unable to represent themselves.32
6.32
The father of a participant highlighted concerns about 'individual dignity', arguing that independent assessors with the technical skills but 'no knowledge of the person or his life' represented an 'intrusion' into the lives of NDIS participants.33

Accuracy of assessments for fluctuating and rare disabilities

6.33
Others expressed concern that independent assessments would not be accurate, particularly for those who had fluctuating, episodic or rare disabilities. For example Ms Vida Reid told the committee:
I have MS. I have been blind in the past. I lost my sight due to my MS. I have been in a wheelchair. I've lost my speech—it comes and goes at times. My stability—that capacity—comes and goes…An independent assessor could come and see me on a good day, for example, and report their findings that I have no issues and my capacity seemed pretty good on the day they saw me and assessed me. This terrifies me and others with a fluctuating disability like mine. 34
6.34
Gi Brown argued at the Melbourne hearing that independent assessments brought 'one main word to mind: static'. They further contended that:
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…
In my personal opinion…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.35
6.35
Ms Leslea Geary shared her concerns at the hearing in Canberra on 20 May 2021 that an independent assessment might take place on a day that her son, who had an intellectual disability, presented:
…with an unrealistic high-level functioning assessment and get woefully inadequate supports as a result. The assessor may find that he's alright, he's articulate, he's friendly, 'He says he's fine'. That doesn't tell us anything about his functioning in day-to-day life where he needs one-to-one support to manage most areas of his life…He might have a really bad day: he doesn't want to engage, he's feeling angry, whatever it might be… That could result in a very different outcome for both long- and short-term supports…
This has kept me awake many, many nights. The annual funding allocation and the eligibility to remain in the scheme could be decided on something akin to a flip of a coin, the luck of a day, the emotional intelligence of the assessor—who knows?
…The plans to date have been very good and very structured and very tailored, and that is the nuance of involving a whole team, not one independent assessor.36
6.36
At the same hearing, Ms Tracy Gorman, the parent of a participant with a rare degenerative disease, shared that:
'My [daughter]…is the only person in the world with her particular variant [of a degenerative disease], making her case different from the other nine people I know of in Australia with this diagnosis. Each of those nine people will have different disabilities…making it impossible to regard all cases as the same…[H]er needs cannot be summed up in three or even five hours…Her condition is very complex and changeable, and she does not fit into a box you can tick without reasoning and other variables being considered.'37
6.37
Chapter 5 outlines in further detail concerns raised by experts about the appropriateness of the proposed tools for rare, degenerative and episodic/fluctuating disabilities.

Questions about the role of allied health professionals

6.38
Some family members of people with disability questioned why independent assessments were needed to replace existing reports from allied health professionals. For example, the grandmother of a participant argued that 'To dismiss the opinions, reports, observations and input of medical professions and allied health workers when determining the funding levels for an NDIS participant seems ludicrous'. She further contended that most participants would still need 'regular check-ups and appointments with their medical team anyway, and physios and OTs regularly feed back from the programs that they're running' with participants.38
6.39
Similarly, the mother of a participant asked:
Are our health and medical professionals not competent to present this evidence in their reports? Why do we now question our allied health and medical professionals' abilities to follow strict protocols and guidelines for assessments to reflect true outcomes and observations in their assessments and expected reporting pathways?
These professionals have dedicated their lives to their professions, and now we appear to undermine their reports and assessments…39
6.40
In the same vein, the mother of three participants argued that an 'independent assessor isn't going to know my children. Our therapists know our children, and they are the voices that should continue to be heard over the independent assessors'.40 This was echoed by another mother of a participant, who argued that disregarding 'these specialists and therapists is saying that they, in all they have studied and worked for, are not the expert that one individual assessor is, which is ridiculous and condescending'.41
6.41
Another parent of a participant questioned how an independent assessor with no knowledge of her son's congenital neurological anomaly, 'utilising a standardised tick-and-flick assessment tool and a maximum three-hour interview, will understand his needs greater than the therapists that have facilitated his development..?' She also asked the committee, rhetorically, who would 'seek an alternative doctor or pharmacist every time you require medical advice because the benefits of independence and lack of knowledge of your medical conditions lead to a better outcome?'42

Concerns about transparency and review rights

6.42
One participant, whose son was also a participant, expressed concerns that the independent assessment process would 'not be honest and transparent', drawing on their previous experience of an NDIA-ordered independent assessment:
NDIA ordered an Independent Assessment of my son to determine his in home support needs. We agreed, on the condition that NDIA agreed to abide by the assessor’s recommendations. We had written confirmation of this agreement. NDIA chose the assessor, she came and did a very skilled and comprehensive OT assessment, and recommended a substantial number of hours per week of funded support. When we got his Plan, NDIA had funded under one tenth of the recommended level of support. Several years later the assessor saw me in a shop, and approached me. She asked if I realised that she was never paid for her assessment. She said that NDIA asked her to change her report and reduce her recommendation, she had refused, and they refused to pay her. She got fed up with chasing them and arguing about it, so she gave up.
So I am terrified of having my funding levels tied to an independent assessment. Even if it is done by someone very knowledgeable in the area of disability, even if the assessment is totally optimal, I do not trust that it will be used fairly.43
6.43
Mr Simon Reid, the father of a participant with autism, outlined his concerns as a parent about review rights:
What if, during one of these…sessions, they get it wrong? While my wife and I are alive, we can and do advocate for our son…What if we're no longer there to fight for him, and some company, hell-bent on scalping NDIS money, decides my son is no longer eligible? What will his life look like? The thought terrifies me to my very bones.44
6.44
The question of oversight of independent assessments is discussed separately in Chapter 7 of this report.

Comments about the need for a sustainable NDIS

6.45
Some participants and their family members emphasised their support for the sustainability of the NDIS, while outlining their concerns about independent assessments. For example:
We believe, our community believes, in this scheme. We have seen firsthand the incredible impact that it can bring, and we fought hard for it. I do not believe there is one member of our community that does not want to work with the NDIA to build a better scheme for all of us. We, as a group, are absolutely committed to working with the NDIA to build something sustainable and better…45
6.46
Ms Jane Wardlaw, a disability advocate, argued at the Hobart hearing that the overall disability supports system had not been implemented as envisaged, meaning that for many people, their only access to disability supports was through the NDIS:
…the original design of the NDIS was a three-tiered system… [T]ier 2… was to be a significant capacity building exercise which allowed better, meaningful inclusion of people accessing mainstream and community services…Unfortunately, tier 1 of the scheme, which was really only meant to be for a small, select cohort of people living with disability because the other two tiers would be working at their full steam and be more inclusive, is the only opportunity that people living with disability now have, depending on severity or not, for accessing services. So what we see is that we've got a huge demand for NDIS because it's the only way people are able to access the supports that they need…46

The NDIA's position

6.47
Mr Martin Hoffman, the CEO of the NDIA, told the committee before independent assessments in their proposed form were cancelled that the NDIA intended to learn from the trials of independent assessments, particularly in the context of sensitive questions being asked:
…to make sure that…questions are used appropriately and are used sensitively…[W]e're looking at the ways in which, consistent with the structure of the tool, those questions are optional or may not be raised at all. That's one of the learnings and improvements we are certainly gaining from the pilot.47
6.48
In a speech on 23 July 2021, after the announcement that independent assessments in their proposed form would not proceed, Mr Hoffman acknowledged:
…the real difficulties and challenges of our interactions with the disability sector, with many of you, over the past few months.
It has not been easy for anyone, including my staff, but particularly for participants. And for my part, that is a source of regret.
I hope also everyone involved can acknowledge the good faith and good intent of all involved, whether or not specific views and proposals are agreed with or not.
I know we continue to share the same goal—to make the Scheme the best it can be and ensure it is in place for generations to come.
The Agency fully recognises we cannot play our part in achieving this goal without working closely with the disability sector and participants…48
6.49
In answers to questions provided on 2 August 2021, the Minister and the NDIA flagged that the Minister and state and territory disability ministers would be working 'in partnership with those with lived experience of disability and disability representatives to co-design a new person-centred assessment model that ensures fairness and equity'. Further, it is anticipated that this new model 'will also seek to address fairness, consistency and to minimise costs to participants'.49

  • 1
    See Name Withheld, Submission 180.
  • 2
    Mr Jeff Smart, Private capacity, Proof Committee Hansard, 20 May 2021, pp. 24—25; Mr Jeff Smart, Submission 336.
  • 3
    Ms Teena Roberts, Private capacity, Proof Committee Hansard, 20 May 2021, p. 26.
  • 4
    See Name Withheld, Submission 354.
  • 5
    Name Withheld, Submission 25, [pp. 2, 3].
  • 6
    Name Withheld, Submission 25, [pp. 1—2].
  • 7
    Name Withheld, Submission 25, [p. 3].
  • 8
    Ms Jaimee Witcome, Private capacity, Proof Committee Hansard, 4 May 2021, p. 37.
  • 9
    Ms Jaimee Witcome, Private capacity, Proof Committee Hansard, 4 May 2021, pp. 37—38.
  • 10
    Ms Grace McLoughlain, Private capacity, Proof Committee Hansard, 23 April 2021, p. 46.
  • 11
    Ms Jane Wardlaw, Private capacity, Proof Committee Hansard, 30 April 2021, p. 29.
  • 12
    Ms Naomi Jennings, Private capacity, Proof Committee Hansard, 27 April 2021, p. 52.
  • 13
    Brotherhood of St Laurence, Submission 211, pp. 15—16.
  • 14
    South West Autism Network (SWAN), Submission 221, p. 4.
  • 15
    South West Autism Network (SWAN), Submission 221, pp. 4—5.
  • 16
    Ms Nick Avery, Chief Executive Officer, South West Autism Network, Proof Committee Hansard, 27 April 2021, p. 37.
  • 17
    Occupational Therapy Australia, Submission 159, p. 26.
  • 18
    Mr Simon Edwards, Private capacity, Proof Committee Hansard, 30 April 2021, p. 37.
  • 19
    Mr Jeremy Le Roux, Private capacity, Committee Hansard, 23 April 2021, p. 46.
  • 20
    Ms Christian O'Connell, Private capacity, Committee Hansard, 23 April 2021, pp. 42—43.
  • 21
    Ms Zoe Mithen, Private capacity, Committee Hansard, 23 April 2021, p. 44.
  • 22
    Ms Vida Reid, Private capacity, Proof Committee Hansard, 27 April 2021, p. 52.
  • 23
    Ms Delyse Clayden, Private capacity, Proof Committee Hansard, 27 April 2021, p. 50.
  • 24
    Ms Jane Wardlaw, Private capacity, Proof Committee Hansard, 30 April 2021, p. 25.
  • 25
    Ms Marg Knight, Private capacity, Proof Committee Hansard, 4 May 2021, pp. 35—36.
  • 26
    Ms Leah Katieva, Private capacity, Proof Committee Hansard, 4 May 2021, p. 38.
  • 27
    Gi Brown, Private capacity, Proof Committee Hansard, 23 April 2021, pp. 18, 24.
  • 28
    Mr Dougie Herd, Chair, ACT Disability Reference Group. Proof Committee Hansard, 20 May 2021, p. 17.
  • 29
    Mr Felix Kaesler, Private capacity, Proof Committee Hansard, 23 April 2021, pp. 48—49.
  • 30
    Name withheld, Submission 20, [p. 2].
  • 31
    Name withheld, Submission 23, [p. 1].
  • 32
    Name withheld, Submission 19, [p. 2].
  • 33
    Name withheld, Submission 20, [p 3].
  • 34
    Ms Vida Reid, Private capacity. Proof Committee Hansard, 27 April 2021, p. 53.
  • 35
    Gi Brown, Private capacity, Proof Committee Hansard, 23 April 2021, pp. 17, 24.
  • 36
    Ms Leslea Geary, Private capacity, Proof Committee Hansard, 20 May 2021, p. 31.
  • 37
    Ms Tracy Gorman, Private capacity, Proof Committee Hansard, 20 May 2021, p. 32.
  • 38
    Ms Heather Colvin, Private capacity, Proof Committee Hansard, 27 April 2021, p. 56.
  • 39
    Ms Kym Pascal, Private capacity, Proof Committee Hansard, 27 April 2021, p. 51. This issue was not limited just to evidence provided by people with disability and their families—for example, Enable Plus contended that 'We are trained to provide objective, professional, and ethical reports, even when the information might be inconsistent with the desires of a client, parent, or school', and argued that the 'same professional practices apply to functional disability reports as they do with neuropsychological, forensic, speech and language, and other reports'. Enable Plus, Submission 1, pp. 9–10.
  • 40
    Mrs Stacey Gittus, Private capacity, Proof Committee Hansard, 30 April 2021, p. 35.
  • 41
    Ms Tracy Gorman, Private capacity, Proof Committee Hansard, 20 May 2021, p. 32.
  • 42
    Ms Clare Waiss, Private Capacity, Proof Committee Hansard, 30 April 2021, p. 32.
  • 43
    Name Withheld, Submission 345, p. 2.
  • 44
    Mr Simon Reid, Private capacity, Proof Committee Hansard, 27 April 2021, p. 54.
  • 45
    Ms Clare Gibellini, Private capacity. Proof Committee Hansard, 27 April 2021, p. 49.
  • 46
    Ms Jane Wardlaw, Private capacity, Proof Committee Hansard, 30 April 2021, p. 24.
  • 47
    Mr Martin Hoffman, CEO, National Disability Insurance Agency, Proof Committee Hansard, 4 May 2021, p. 10.
  • 48
    Mr Martin Hoffman, From the CEO, Speech, 23 July 2021, ndis.gov.au/news/6637-stay-informed-ceo-future-ndis (accessed 29 July 2021).
  • 49
    Response to written questions by Senator the Hon Linda Reynolds CSC, Minister for the National Disability Insurance Scheme, requested on 25 June 2021, received 2 August 2021, [pp. 4, 8].

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