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Joint Standing Committee on the National Disability Insurance Scheme
Independent assessments

CLAYDEN, Ms Delyse, Private capacity [by audio link]

COLVIN, Ms Heather, Private capacity [by audio link]

GIBELLINI, Ms Clare, Private capacity [by audio link]

JENNINGS, Ms Naomi, Private capacity [by audio link]

PASCAL, Ms Kym, Private capacity [by audio link]

REID, Mr Simon, Private capacity [by audio link]

REID, Ms Vida, Private capacity [by audio link]


CHAIR: We will now move to some short statements from a number of individuals. I welcome everybody who has joined us. Before we start, can I remind everyone that these are official parliamentary proceedings. We plan, when we are not subject to COVID restrictions like we have been the last few days in WA, to actually come to WA as a committee and have the tune of the hearing from some more people without the constraints that we have at the present time. I will give you an indication after about five minutes, so if you could up wind up within a minute or so after. I apologise for constricting it but I want to try to get through everybody who wants to have a say. We are not going to ask questions. We are going to listen to you. Obviously, independent assessments is the subject matter of this inquiry, so if you can relate your comments to that, whether you have experienced an independent assessment or whether you have concerns about independent assessments et cetera, that would be most helpful to the committee. If there is further material you want to put before the committee, you can do that in writing after today.

Ms Gibellini : Good afternoon, everyone. Thank you for the opportunity to speak today. I would like to take a moment to acknowledge the Noongar Whadjuk people, the traditional custodians of the land I am currently on, and I wish to acknowledge the strength of their continuing culture and offer my respects to elders past and present. My name is Claire. I am a wife, I a mum to three amazing kids and I am also autistic. When the opportunity to speak today arose, I thought very long and hard about the implications of speaking publicly and about the possibility of negative impacts on the people that I love. Truth be told, I am still a little nervous about that possibility. But I believe it is necessary for the committee to hear as many stories as possible and I would like to share some insights into a couple of people that I hold dear that will be impacted by the introduction of these independent assessments.

Firstly, I would like you to introduce you to my son. He is an amazing young man who has worked very hard to achieve great things in his life. He is resilient, he is loving, he is considerate and kind, he is an incredibly hard worker and he is loyal. Until January of this year, he worked full-time for an international mining equipment organisation. He's recently returned to school to complete Year 12 and is now working as a support worker. He's purchased his first block of land. Had you asked me 10 years ago, I would have told you I was concerned we would be dealing with the justice system today but, thanks to huge amounts of investment and resources from our family and the WA NDIS and NDIS, we are not. His story is exactly the kind of story that the NDIA marketing team would love to showcase. We know this because they have tried. That actually places him, under these circumstances, at enormous risk. Because under these proposed changes, when he sits down in front of someone new and shares his achievements, we face the opportunity that he will be deemed ineligible for the scheme. We have worked incredibly hard to build exactly the right team around him to support his achievements. His plan now is utilised in a way that focuses on maintaining what he has achieved. It often takes him at least six months to feel comfortable with therapists and other supports. It often takes at least that long for those individuals to learn his language. It is simply not possible for an assessor who does not know him or our family to enter our home and make accurate judgements about the levels of support that he needs to continue to live the life of his choosing. Both he and I believe it to be a violation of his rights as a human being to have no avenue of appeal when, not if, the assessor gets it so very wrong. To put it bluntly, the removal or reduction of his supports will have a catastrophic impact on his life.

I'd also like to speak to you, with permission, about another dear friend of mine. She's a young woman much loved by her community. She is fierce, determined, and has a great sense of humour and a very clear idea of what she wants. She just happens to rely on others for all aspects of her daily life. For this young lady and her family, the consequences of the introduction of the changes will also likely have a detrimental effect. She has a rare condition—so rare, in fact, it doesn't even have a name. It requires multiple hours of input from multiple specialty teams to determine the best way in which her support needs are met and her voice is heard. Her sole informal support comes from her mum, who loves her completely and is her greatest advocate, and me. Her mum, after a lifetime of providing physical care, is no longer able to do so and has her own health challenges; and I live almost 300 kilometres away. All other supports are provided through her NDIS funding. Our concern for our loved one is that it takes a significant amount of time to understand her needs and her goals, like it does for my son. It takes significant investment by multiple therapists to determine her support needs and to predict what she may need for the future. Failure to do so actually puts her at the very real risk of being placed in an aged-care or group home setting before she's 30. This is not what she or her loved ones want, and I do not need to remind this committee of the rates of abuse of vulnerable people in these settings.

You'll note that at no time when introducing these two people to the committee have I spoken about their deficits; nor would it be appropriate to do so. They are so much more than the sum of the things that they can't do. Their individual achievements should be celebrated and shared, but there is one inescapable fact, and that is that the introduction of these assessments will push us right back to the medical models of talking about ourselves and our loved ones with a deficit focus, in the hope that we will receive a budget appropriate to our goals and needs. The NDIA is making much of the idea that we will have the flexibility within plans to work towards our goals, but that will be of little comfort when you receive a budget that is not negotiable and forces you to set aside one goal for another because you or your budget simply can't afford it. I've already heard of one participant being told by an LAC to choose one or the other: continence supports or employment. The NDIS last week published documentation identifying that, if somebody has therapists, they cannot access sensory items, as it would be a duplication of services—one or the other, not both.

In terms of sustainability, I think that a fundamental conversation piece has been missed. The scheme is still relatively new. Its first stages were always going to be expensive when you have people on a 20-year waiting list for supported housing, people waiting years for equipment from multiple funding applications, and people living with 20-year-old wheelchairs. It takes time for this to catch up.

I think it's also important to remember that this is not our income. This is funding to purchase the supports that we need for everyday life, and much of that funding actually goes directly back to the economy in some way. With our funding, we're purchasing the equipment from largely Australian owned businesses. We're employing individual Australian workers as support staff or using Australian support providers. This creates jobs. People pay income taxes and company tax—not to mention the fact that when we are properly supported we spend our own money on things such as activities and meals in the community. We volunteer. We work. We pay taxes. The Productivity Commission said it best:

The implication of this is that the upfront fiscal costs, while significant, are partly offset by eliminating the hidden future liabilities of the current system. Moreover, from an economic perspective, the benefits of the NDIS will exceed the costs.

According to the IMF report I read recently, our government spends approximately $29 billion in subsidies to the fossil fuel industry, equating to about $730,000 per job that it generates. My question is this: why does this government see disabled people as less worthy of investment than multinationals who take resources and profits offshore? Why, in a time of economic instability due to a global pandemic, with estimated shortages of around 90,000-plus workers, do they not see the benefits to our GDP of a fully funded scheme?

Only today, a statement was released on the NDIS website that has the final tagline 'We want to get it right and we must get it right'. 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, because, after all, we're going to be the ones that will wear the impact if it's not.

The current consultations have unfortunately not been meaningful, and we have definitely not been heard or involved in decision-making that will affect our lives. I've been part of these myself and found the process to be superficial at best and traumatising at worst. We need and we deserve meaningful commitment from the NDIA that they will stop this process, come back to the table and work alongside us to develop this scheme. Our Prime Minister is fond of his particular catchphrase, 'If you have a go, you'll get a go,' but it's very hard to enter the arena when the entrance isn't accessible.

CHAIR: Thanks, Ms Gibellini, for sharing your experience and story with us. We appreciate that very much. Can I now go to Ms Clayden? Again, about five minutes, Ms Claydon. I'm sorry to constrain it.

Ms Clayden : That's okay. I'm a parent, a teacher and an advocate. When thinking about the independent assessments the Morrison government want to bring into the NDIS, I feel a sense of déjà vu—another government institution that has lost touch with the reality of being in a working-class society. Schools are still inflicted with the inequity of NAPLAN standardised testing, and the independent assessments proposed are just an echo of that. So please explain to me how this formal process by a stranger in one moment in time on one day of the year is possibly going to encompass the complexities of my autistic daughter, or anyone with or without a disability. How can this one person, who knows nothing of our family history and the amount of support my daughter has had so far, judge her on her functioning? And how can I, as a parent, allow my daughter to be exposed to such a stressful situation?

My daughter is a selective mute. For those who do not know about selective mutism, it is an anxiety based condition that inhibits her ability to speak in a majority of situations. But sure, go ahead, and ask her questions about her functionality. You can ask all you like, but she won't be able to answer. Asking participants with or without communication issues to self-rate their functionality is stripping their dignity and akin to needing to prove innocence of a crime. You're also assuming that people deeply think about the disability and how bad they have it. Seriously, most people get on with life and don't sit around crying, 'What about me?' My daughter certainly doesn't. And I can say this: no-one likes to ask for help. Whether a parent or a participant themselves, asking for help is not easy. I don't want to admit that I can't help my daughter with all she needs. It actually breaks my heart that I'm not enough for her, and I'm a very educated person. 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. All standardised tests do are favour those who can communicate for themselves effectively. Jahneille Cunningham, a researcher in the US, states:

that standardized tests serve a more malicious function … by systematically erasing epistemologies that differ from the dominant society.

She also states:

that such tests have marginalized low-income students and students of color—

Standardised testing creates a winners-and-losers mentality. Standardised testing doesn't work in education, and it will not work in disability. Formative assessments are essential in developing the whole picture and complexity of a person's disability.

Bob Jackson, another well-known advocate in the disability community, has stated that inclusion and disability are social issues. If you replace the word 'disability' with 'woman' and ask women to undergo an independent assessment to see if they are, in fact, a woman, would you feel outrage? What if a person of colour was asked to do the same? Society would not allow it, so why is it even being considered for the disability community?

Aside from the obvious questions to be had about the appeal process, we need to know: Are the participants able to view the assessment afterwards? How does that rating system or judgement scale impact on their mental health? What are the safeguards for accountability and integrity?

I'm not saying that the NDIS as it stands doesn't need some adjustment. It is clear even to the current federal government that that is so, but this measure does not add to a solution; it only exacerbates problems. And I'm not saying I have all the answers. I'm not a member of the disability community. I am but one advocate, one parent, and teacher, acknowledging that the voices of the disability community themselves need to be heard. With so much opposition to a process, how can the government continue to say it is acting responsibly for its people?

Thank you for your time and consideration. I consider it an honour to appeal to you in this way, and my daughter has consented to my disclosing her disability to you. In fact, it has actually sparked a conversation with my daughter about her rights for the first time. She's 13. She's now very aware how unfair the government can be and wants me to help change it, so thank you.

CHAIR: Thank you, Ms Clayden, and thank you for being succinct. Ms Pascal.

Ms Pascal : Thank you for the opportunity to speak today. I'm a parent of a now 16-year-old youth with a dual diagnosis. Our journey started when my son was two years old. We've attended many medical professional assessments and therapy assessments, followed by early intervention and ongoing intervention and specialist appointments. It's been our life since he was two years old. The journey with my son has been a long and turbulent road with thousands of hours of appointments outside the home and in the home. It's exhausting for the primary carer and the person with the disability. However, the gains in independence and skill-building are essential and have paved a path for my son to be the very best he can. Yes, we still have an ongoing journey ahead and many lumps and bumps to come. This path has meant having to engage in many services, including therapists, medical professionals and an array of other services; and many reports and assessments with ongoing treatment plans and interventions being designed and implemented, least to mention the sacrifices as a parent and primary carer to ensure the delivery of services and his ongoing care needs are being met. Having reports and assessments to demonstrate deficits and progress is important and an essential part of this journey.

When NDIS became accessible, a new round of evidence was required to access the funding model. Further assessments or reports from professionals were required, as well as many documents to be filled out. This process was exhausting. Finally, the initial planning meeting was conducted, and my son's first NDIS plan was presented. We were lucky. We received a good plan, but this was due to the knowledge and background and months of planning and preparation with his therapist and specialist to ensure all evidence was presented. However, in his first plan we were asked to ensure a functional capacity assessment was conducted. After all the planning and evidence provided, yet another hurdle, another assessment, another expectation to prove the need for service. My son went through this process, and at the review of his first plan this was presented as evidence.

I have concerns related to the current consideration around implementation of independent assessments being accepted. Firstly, how can it be expected that an assessor can come into a person's home and complete an assessment of a person with a disability with around three hours or so that truly reflects their deficits and their abilities? This type of information is collated over months of intervention by allied health professionals to ensure a true reflection of the person with the disability is collated, and it's conducted through many different assessment processes, often across different environments and whilst doing different activities to allow for a true gauge and observations, assessments can be collated. So I ask: why are the people with disabilities now expected to have no choice and control over who enters their life to assess their needs and provide a report of what they do and don't need to live as independently as possible? 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, choosing to put yet another layer on top of the current NDIS system in place to allow access and ongoing eligibility. This will be another expense utilising funds that could be used to support people with disabilities within the current NDIS model.

I'm also a general manager of an organisation that provides accommodation and community services to our most vulnerable and our First Nations people. NDIS, since its inception, has already changed the criteria to access services that met people's needs. It appears the honeymoon phase of choice and control, living the life you choose with the supports to do so, has now taken a full circle. Many people with disabilities that live in the community but do require 24-hour supports are being reviewed and assessed as not requiring this level of support, even though the evidence collated by the therapists and service providers demonstrates the need for the level of funding in place to continue.

Like all people, people with disabilities wish to live in their own home within the community. Are we now going to change and go back to group homes due to the costs? To do this, are we not taking away their human rights? Is this what the independent assessments are going to be for—reducing costs and cutting outgoing funds? Would it not be better to not place yet another layer of assessments and requirements onto an already stringent process? It does appear to be a layer that will have further overheads and further financial requirements that could be prevented, allowing for these funds to filter to those that truly need support to live as independently as possible, continue to increase capacity, learn skills for life and gain pathways to employment. This would allow our people with disabilities to contribute to society in ways they are able, to form longstanding support networks and friendships, and to engage in activities like all other citizens.

Lastly, I would like to touch on our First Nations people. With much respect to our First Nations people, I ask: why are we placing further hardships on this area of service? Due to the impacts of generational trauma, our First Nations people err on the side of caution to ask for help and support, to speak and to have a voice, especially when it comes to needing assistance with disabilities and psychosocial disorders. Many stay silent, scared that they will have their children removed from them, or will ask for help and support, only to be turned away and feel shame and lack of self-worth all over again.

I have seen firsthand as a parent and a professional what NDIS funding, when allocated correctly, can do. I ask that genuine consideration be given to prevent proceeding into independent assessments going forward and another layer of expense and overheads being added to a system that is being refined as we speak. Please listen to us, the people, and allow us to seek the supports we need. Accessing the medical and allied health professionals we feel will be the best team members for our people with disability to increase independence and reach their dreams and self-determination. It is really a journey that requires strength and agility to navigate, and many are being left behind. NDIS was created for the people with disabilities to stop roadblocks and doors being shut in their faces. NDIS is meant to be a pathway for success across all personal needs and environments. So I ask: please don't place independent assessments as a means to make it better; rather, refine what we have and continue to improve our NDIS. Thank you.

CHAIR: Thank you, Ms Pascal, for sharing that with us. I share that Ms Jennings is online. Are you happy to go next, Ms Jennings? You may not have been on earlier, but if you can, please keep your remarks to about five minutes. I need to try and get through everybody by 4.30, when we have to vacate this room, and I don't want to cut anybody off if I can avoid it. Please go ahead.

Ms Jennings : I am appearing here today as the mother and primary carer of my son, who has autism. He has been a participant in the NDIS since it was a pilot program here in WA. We are currently in planning for our sixth plan. I lobbied my state and federal representatives for the NDIS as I believed it would finally help to deliver a fair and united disability support system to ensure all people with disabilities were able to access the services they needed and deserved to live an equal and full life. Choice and control are basic rights that so many people with disabilities have been denied. The NDIS was supposed to help this right be restored to people with disabilities.

During the six NDIS plans we have been involved with, we have experienced NDIA staff regularly disregarding the recommendations, reports and goals of our therapy support team, family and the participant. We have seen cost-cutting measures put before the needs of the participant. We have also seen the benefits that a person with disability experiences when they have access to the therapy, care and support services they need to be able to live a regular life. Personally, the ability to access assistive technology and therapy services have made life-changing differences for my son, and his family.

We were recently invited to participate in the pilot program for independent assessments. After much research, I chose to decline to participate. There are several reasons we chose to decline to participate. First, 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. Most 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. We have a team of qualified professionals in place who regularly submit reports to NDIS staff on our progress and who are better placed to advise on our needs than any tick-a-box style of assessment is. Fourth, we have already met the NDIS' 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.

I personally feel that forcing people with disabilities to participate in individual assessments in which the focus is on what they can and cannot do due to their disabilities will have a negative impact, making them feel less and feeling like they have no right to choice and control in their care and in their lives. Thank you for taking the time to listen to me on this matter.

CHAIR: Thank you very much, Ms Jennings. Thank you for sharing that with us. We appreciate it. We now have Ms Reid and Mr Reid on the line. Would you like to contribute?

Ms Reid : Good afternoon. Thank you. I'll go first and Simon will go after me. First of all, I would like to thank the Hon. Bill Shorten for letting us know about this committee meeting, and thank everyone else for listening, as well as giving other members and stakeholders in the disability community a voice. My name is Vida Reid and I not only work within the disability sector, I also have a disability, which is multiple sclerosis. I have a six-year-old son who has autism, ADD, ADHD, GDD, profound intellectual disability and is currently being tested for Prader-Willi. He is also living with a disability.

In my role as a director of a support coordination provider, I support NDIS participants to access their funding, assisting them to link with much needed therapies and supports. In the dealings I have every day with participants, making a very [inaudible] connection is so important. I believe this standardised testing will eliminate the personal factor that everyone deserves, whether they are living with a disability or not. What happened to choice and control?

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. Many participants have been seeing the same occupational therapist or speech therapist and under such therapies for an extended period. The reports that are submitted from these services come from experience and knowledge of the participant, with extensive background history. Some participants have complex diagnosis, requiring confluence between formal, informal and mainstream reports. This information cannot reliably be delivered after one or two meetings.

Take myself, for example. 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 time. My stability—that capacity—comes and goes. I have had multiple falls which have resulted in me being in hospital due to hitting my head on concrete floors or the ground. 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. A system that is already so overwhelming, even for those of us who do it on a daily basis, has become almost impossible to navigate and understand for anyone who doesn't come in with prior knowledge and training. The idea that two people who have the same kinds of symptoms live the same lives is naive and short-sighted. There are so many other factors that should be taken into account when considering what funding is required. Not everybody fits into the box that the NDIS has tried to quietly deliver to our doors.

The contracts for generalised testing have gone to large corporations that are dipping their toes into every aspect of the NDIS, cornering the market of support coordination, local area coordination, support workers and plan management. Participants will be handed from one branch to the other without prior consideration of choice and control. I have already experienced this in a planning meeting with a participant. They stated they would be referring the participant to their community connections team after the plan was completed. I was astounded that this was not discussed with the participant and no other options were given. It was said in such a way as to make it sound like that was the only course of action available. These corporations are even using NDIS email addresses. I believe this is a misrepresentation of who they are and a deliberate attempt to corner the market. Furthermore, I, as a participant, do not feel comfortable that a partner in the community is now majority owned by an American company that's allegedly in the business of advanced manufacturing but also owns and buys other businesses. These people are now going to be in charge of doing assessments on people with disabilities, making money off the back of disabled Australians and sending the profits offshore to potentially create [inaudible]. Great! Wonderful! This sort of thing isn't limiting choice and control; it is removing it altogether.

I also believe calling this wonderful scheme 'NDIS', aka insurance scheme, is wrong. It sets the wrong tone and opens up the wrong type of debate with providers or partners in the community, as we are seeing take place now. It should be called the national disability investment scheme, because we are investing in people with disabilities to have a voice, to live a life of quality, to be heard and to have equal opportunity.

Again, I would like to thank you for the opportunity to speak today and have my voice heard. I hope that, with each participant, family member or provider that joins in the call for change, we will become so loud that our voices can no longer go unheard. Thank you.

Mr Reid : Good afternoon. Thank you for having me. I am 39 years old. I have two family members on the NDIS, my six-year-old son, Alex, and my wife, Vida. I'd like to speak about the relationship that my son has, as Vida has already spoken about her experience.

Alex was diagnosed with autism spectrum disorder, profound intellectual disability, global developmental delay and attention deficit hyperactivity disorder at two years of age. These labels are not who my son is, though. He's a cheeky, active and adventurous boy who loves the outdoors, Peppa Pig cartoons, holidays, swimming, picnics and camping. Before these diagnoses, we didn't know why Alex acted the way he did. He would scream, spin in circles, laughing, for hours and run away from home naked. We would find him in other people's gardens or on the highway, nearly being run over. He would not speak a word and would not look at you. He didn't listen to direction. He would not use the toilet. He would soil his pants or defecate on the floor. We could not take our eyes off him for a split second, for fear he would run into traffic and die. He would rage and scream at anyone who tried to teach him anything. He would destroy the house around him. He would smash holes in the walls, peel paint off and destroy his bed in a rage. We didn't know what was wrong, and we were burning out. We were at breaking point. Our relationship was falling apart. We were socially isolated, because we didn't want friends to see how we were living, and we felt that no-one wanted to visit us. Our mental health was deteriorating. I spent every waking hour desperately searching the internet for a way to make my son better—a way to make him normal, I'm sad to say. We didn't want him to live a life of suffering and of being an outcast.

A year later we joined the NDIS. At first we didn't understand it, but, once our coordinator helped us set up our supports, our life got better—substantially. We had expert therapists to help us understand why our son acted out, why his sensory needs were not being met and what we could do to interact with him more effectively. We had someone who would come and help maintain our household to a normal standard every time Alex smashed holes in the walls or destroyed the fences. We even had a support worker who would come and assist us to take care of Alex during the day and allow us a little bit of breathing space to be normal people. We had someone to help take him to the many therapy classes he had every day—someone to be there for us, to share the burden. Oh my god: what a relief!

Alex's behaviour started to improve with the therapy. He began to speak, and his aggression lessened as his ability to express his desires grew. He learnt routines, and we learnt how to help him regulate his emotions and use words instead of violence. He went from an education support program to recently being enrolled in a mainstream school. We've been supported along this journey to a semblance of normalcy by the NDIS. None of the mainstream support has come close to helping us in this way.

So why are we scared of independent assessments? There are a few reasons. The first is that we don't see how someone who doesn't know Alex would even be able to assess him. If you've ever had an autistic child in any sort of setting where you want them to follow some sort of procedure, good luck. The therapists we work with know Alex. They know when he's in a state for interaction and when he needs to finish exploring; they know when he's escalating and when he's focused. They can make an accurate assessment over time and report accurately, giving an informed picture of what his and our lives look like. To have an outside company come in, one that doesn't have a relationship with us, makes us feel like some kind of zoo animals to be observed interacting in our natural habitats. My son has had enough degrading things happen to him over his short life. We cannot risk him suffering torment at the hands of a company without an interest in him and tasked with cutting his funding. Although the NDIA says that's not the case, we all know that that's what this is about.

The second thing we've heard that scares us is that these independent assessment can't be appealed. What if, during one of these one-hour sessions, they get it wrong? While my wife and I are alive, we can and do advocate for our son. We've had to enlist lawyers to access the support he needs. 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.

Another thing that scares us is having our choice and control taken away. We choose who we want to interact with our son, based on their experience and their reputation. Independent assessment companies will be forced upon us, whether we want those people in our home or not, and their findings will be forced on us, without room for appeal. Then there's the fact that we have an example of what this will look like already. In the UK they have independent assessments, known as PIP assessments. If you need an example of what a catastrophe this will be, you need only look there: widespread reports of assessors not even understanding the ability they were assessing; no respect for people with disability; people having disability scooters taken from them; and massive numbers of appeals against the assessments, with 60 per cent of these appeals being successful. This is a game for these companies—making money—with people's lives being the collateral damage.

Let's not get started on the conflicts of interest—companies that have the contracts for the assessments having ties to NDIS agents and partner-in-the-community roles, not to mention having ownership of service provider companies. How can the same companies that are proposed to be the gatekeepers of the NDIS also write the plan and provide services? Does the agency not take conflicts of interest seriously? It appears not.

Independent assessments are not independent. How can they be when they are being funded by and reporting to the NDIS? They will serve the multimillion dollar interests of their government overlords and slash and burn people from the scheme. I fear that, one day, I will not be here and my son or my wife will be slashed, burned and added to the pile of human collateral damage that once was the NDIS, the pride of the world. Remember: how we treat our most vulnerable is always a measure of our humanity. Thank you.

CHAIR: Thank you, Mr Reid. Thank you for your contribution. Ms Colvin, if you'd like to make some comments, please go ahead now.

Ms Colvin : I have an adult grandson who is a participant in the NDIS. He has a diagnosis of autism, hypermobility disorder and verbal dyspraxia. My other interest in the disability area is from my working life as a primary school administrator, putting together plans and developing learning models to support students with disabilities.

Before raising my concerns about the proposed change to an independent assessment model, I wish to make some comments on the current scheme. In my experience, the NDIS has had an amazing impact on the lives of people with a disability in Australia and their families and loved ones. I think we should all be really proud of the system that's developing. While it's not perfect, it is still growing and developing, and the overall effect has transformed the lives of so many people.

As a private citizen, I'm delighted to observe the interaction of disabled people in our community at a level that I would not have thought possible even 10 or 15 years ago. I see many more people with a disability, young and old, joining in a wide range of activities: sports, shopping, concerts, movies, swimming, dining in cafes and restaurants, art groups, learning new skills, attending TAFE training courses and participating in workplaces—in short, leading a more fulfilled and active life. In doing so, they're also spending money in local businesses and creating demand for a range of specialist carers and allied health professionals. The engagement with the wider society is therefore doubly beneficial, and this is undoubtedly due to the introduction and implementation of the NDIS. I think this will be a win-win situation, as the Productivity Commission predicted.

At a personal level, I've seen my grandson gain confidence to be out and about, demonstrating improved social skills, beginning a journey towards improved fitness, showing more enjoyment of each day and starting to think and plan positively for his future. He smiles more. He's more positive. He looks forward to his week and the activities he does with his wonderful support workers, thanks to the NDIS and all those people he has around him.

I've read much about the introduction of the independent assessments and listened to public debate and social media posts. Minister Robert has said that the goal of the move to this model is to provide a simpler, fairer, faster and more flexible NDIS. My reaction to this stated goal is: don't change what doesn't need changing. The full implementation of the NDIS was never intended to be a short-term objective. A system of such complexity is bound to throw up shortfalls, problems and oversights, and these should be addressed as needed. The current system is simple, fair and flexible. If there are delays then resources need to be directed towards fixing them.

The Tune report suggested that the changes will make the system transparent, responsive, respectful, empowering and connected. It goes on to say that they will take a holistic view of participants' needs. I don't really see how that can be done with a telephone conversation, running for perhaps an hour, and a few questionnaires. Where is the research or the report that shows that these elements are lacking in the current spend? How will independent assessors using a common assessment tool make it any more certain that these goals—making the system responsive, transparent et cetera—are achieved?

Minister Robert's media release in 2018 asserted that the new scheme would place greater emphasis on individual circumstances. But how can assessment tools that, according to the scheme's proponents, are done the same way every time really assess individual needs? The strength of the current system for my grandson is that a personal link is established with his allied support coordinator. His autism and his verbal dyspraxia make it difficult for him to tell his story over and over whenever he has to access new support services. Since becoming part of the NDIS around 18 months ago, he's been supported by a circle of connected services and allied health professionals who are familiar with him, his circumstances, his progress and his challenges. He shows trust in these people and they certainly work together in an inclusive way. This network of support is a vital part of the current scheme.

Under the new scheme, it's proposed that his needs will be assessed by a stranger—someone who doesn't know him. This would appear to be contrary to all best practice. A person unknown to the participant assessing his functional capacity using a questionnaire format over the phone does not make sense. It will not be fair. It ignores pertinent medical specialist and allied health reports and advice. The assessor will be a trained health professional, it is stated, but can one person have an understanding of all types of disability and their impacts on people's lives? Can one assessment toolkit really deal with the complexity of the needs with those physically, mentally or intellectually disabled, and often with a combination of disabilities? I thank the previous contributors to this session for their stories that reinforce the diversity of the needs in our community.

The proposed model doesn't allow for difficulties in communication experienced by so many disabled people. It's not just being blind or deaf or having speech problems or delays, being non-verbal or having an intellectual disability that presents problems with fairness and access in this proposed model. Factors such as socioeconomic background, non-English speaking background and remote living are also likely to impact on the presentation of information over this telephone conversation. For my grandson and for many others, using the telephone is not something they're comfortable with. Listening to questions on the phone, processing the question and then working out a response can be a very stressful. It's more difficult still when you're doing this on the phone, where extended calls are needed to understand the question and frame an answer and would cause distress and loss of concentration. I might add that I'm finding it quite difficult doing this on the phone. Initially I was hoping that there would be a face-to-face session—but anyway. The difficulties for many other disability categories would be the same or more so. The telephone interview should not be the method of choice but only of necessity.

I'm concerned about the assessment tools being used. I can't find enough information on some to give fair comment. Suffice to say, the idea of a disability neutral assessment tool beggars belief—and to what purpose do we want things to be disability neutral? The needs of individuals vary, disabilities and capacities vary and the level of community support varies. The complex nature of disability has been brought eloquently before this hearing today and undoubtedly in previous forums and submissions—and I thank those people. How do the new tools provide for this difference? How can one assessment tool be used to judge the functional capacity of an autistic person with speech delay and mental health issues and a person who is non-verbal and confined to a wheelchair? I suspect that somewhere there will be numbers to add up alongside the responses and the total will determine the budget to be given—end of story. How does that benefit the participant? How is that transparent? How is that empowering? Where is the choice in that?

The Vineland assessment can be used as part of the process—and it's a useful tool—but, in a phone interview and with a tick-the-box setting, it will provide only part of the picture. Psychologists that use this tool usually garner a considerable amount of additional information during the discussion than is just in a tick-the-box response. 'Do you dress yourself?' is one thing, but 'Do you know what is appropriate dress for the weather or where you are going to?' is another thing—and these things aren't picked up in a standard questionnaire. It also doesn't allow for the level of effort, assistance and preparation that goes into being able to say, 'Yes, I dress myself.' That's just one example, and there are many more.

Parents and supporters of people with a disability and the disabled themselves usually try to emphasise the can-do aspect rather than the things causing difficulty. It's only by asking those additional questions that a true picture of functional capacity can be gained. But I'm sure the tools that have been selected are of good quality. I question whether they're fit for purpose and will give a complete picture. I know any of the committee who have undergone job interviews by phone or in person will decide which one they prefer. The importance of body language and seeing responses on the faces of people around you is vital in establishing the sense of being at ease. This is even more vital for those who have communication difficulties.

There's another statement that concerns me: 'You won't need to worry about chasing evidence of your functional capacity. Your independent assessment will capture all of the necessary detail.' This is worrying to say the least. To dismiss the opinions, reports, observations and input of medical professions and allied health workers when determining the funding level for an NDIS participant seems ludicrous. I understand an amount of funding will be granted based on the independent assessment. The medical and allied health support workers and other input will then be considered as part of a planning session within that budget. That just seems a ridiculous change from looking at the disability, the functional capacity, the supports needed and then requesting a budget to looking at the functional capacity, setting a budget and then trying to fund the supports needed. I don't see how this model can work.

Also, they state in the papers supporting the new system that it's costly to gather the medical and other supportive data. It's almost as if there's a carrot for people to think that somehow we won't do that anymore and it'll be fairer for everybody. Most of participants would have 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 these people.

It's also stated that the new assessments will be free, independent and done by someone who doesn't know you. I don't believe that not knowing the person makes the assessment fairer. In fact, I think it's the opposite. There's some contrary statement around this issue. A media statement from the joint standing committee dated 23 April says that people will be able to choose their assessor from the panel where possible and will be able to have the assessment in their home if they choose. Perhaps this response is due to input received earlier in the process of consultation. If so, I'm heartened that the process is working. But on what basis would we be able to choose an assessor? This isn't clear. Appeals are possible, it seems, but are they undertaken by the same assessor who doesn't know you and is not part of the NDIA? I'd like to think the tools would come up with the same number, and hence the same budget. I note the media statement also refers to extensive consultation undertaken. I'd like to remind those listening that consultation doesn't equate to agreement, and we've seen that a lot in the development of the NDIS to this stage. Independent assessors won't make access or planning decisions, but they will set the budget, which will affect access and planning conditions.

To sum up, I'm unable to see the justification for changing the system. The numbers of people who've been successfully taken into the scheme and the benefit to them and broader society suggest our model is working well. The quality assurance associated with the proposed system seems unclear; it's certainly not transparent. Adding another tier of decision-makers to the system will add to the amount of money being paid out to administer it. I understand these assessors will be working for private companies outside the NDIA. They'll be recruited and trained to become experts, with considerable costs associated with that. How is that justified when we have experts already in the system? Private companies, to me, mean profits—money being taken out of the system. This is a government system and should be supported, funded and implemented by government.

I urge those proposing these changes to reconsider, to look at the NDIS and its remarkable achievement in such a short space of time and to have confidence in its future. The cost of implementing what I regard as unnecessary changes could be put to better use in providing further funding for the current scheme to bring forward supports that people have been waiting for.

I thank you for the opportunity to present this statement and I wish the committee all the best with future deliberations and hearings. Thank you.

CHAIR: Thank you, Ms Colvin. We appreciate your comments about the scheme. That brings to a conclusion our virtual visit to WA today. I thank everybody who has been involved in this for their participation. I thank my fellow committee members, Senator Brown, Senator Steele-John and Mr Wallace, for their contribution. The committee has announced two further hearings, in Hobart this coming Friday and Geelong on Tuesday of next week. There will be further hearings, which will be announced on the committee's website. I thank the secretariat, parliamentary broadcasting and Hansard for their contribution that enabled this to occur today. If there is any supplementary material which any of the witnesses today would like to present to the committee, they can forward it to the committee secretariat via the email address. On that note, I thank everybody for contributing today and I adjourn this hearing.

Committee adjourned at 16:21