More than 4,000 people with disability, families, and people who work in the sector have taken action on NDIS assessments here on the Every Australian Counts website. You have written to your MPs, met with your MPs, written to the NDIS Minister Stuart Robert, made a submission to the NDIA, made submissions to the Joint Standing Committee, and more.

Your actions are showing the government that we are not giving up.

A couple of weeks ago we reached out to those same 4,000+ Every Australian Counts supporters, as well as everyone following us on Twitter and Facebook. We asked people to email their local MPs and Senators and invite them along to an urgent virtual briefing on NDIS changes.

And thanks to your efforts we received an influx new RSVPs from MPs, Senators, and their advisors right in time for the briefing.

If you or your elected representatives missed the briefing you can watch the recording below, read the transcript, or keep reading for our short summary.

So what did people say?

The briefing was a strong and united call to action for our elected representatives. All MPs and Senators from across the country were invited to join us, to hear our communities’ concerns – and support us when the legislation hits Parliament.

The briefing was hosted by EAC on behalf of the 20 disability representative, advocacy, and disabled people’s organisations who prepared the Joint Statement on NDIS compulsory assessments released on March 11, now with over 100 endorsements from the sector.

Mary Sayers, CEO of Children and Young People with Disability Australia was the MC.

Mel Tran

First up was Melanie Tran. Mel is the chair of Children and Young People with Disability Australia. Mel spoke about what the NDIS means to her, and what she and other young people have expressed concerns about in relation to the assessments.

“[The NDIS] has given me the flexibility and autonomy to live my life to my full potential with choice and control. We’ve all seen the shift in attitude, and perception and our culture when it comes to inclusion and diversity. And, I think, no matter what role you’re in, every single person in this call today has witnessed firsthand just how powerful it can be when total control is given to individuals.

“The proposed reforms fail to properly address the underlying reasons for the scheme, and introduces unjust and unreasonable mechanism that will limit the ability for people with disability to have a say in the decisions that impact our lives.

Catherine McAlpine

Next up was Catherine McAlpine. Catherine is the CEO of Inclusion Australia – the national peak body representing people with intellectual disability and their families. Catherine shared a PowerPoint presentation summarising the key points from the Joint sector statement.

The immediate outcry occurred because the government broke its fundamental promise to people with disability, to engage as equal partners in decisions. And, at the same time, decided to fundamentally change the person-centered nature of the NDIS. The mantra “Nothing about us, without us” is not a negotiable or a privilege. The NDIS Act – the law – acknowledges this as a right.

Dougie Herd

Dougie Herd is well known in the disability sector as a fierce champion for the NDIS since before it began in 2013.

He gave our MPs and Senators an important reminder about how we got here – via unprecedented bipartisan political and public support. Dougie explained how far we have come, and why this proposed move is such a massive step backwards.

“Let’s think back to those days when we were building this national project. I was privileged to speak at an Every Australian Counts rally in Sydney on the 30th of April 2012. Think about this consensus-building we’re talking about. Me, a raggedy ass advocate from Scotland, originally working and living in Sydney. I was introduced to the rally by its MC, Tim Fischer, the former National Party Deputy Prime Minister of Australia. I was speaking to an audience at that rally in Sydney of 5000 people, including Prime Minister at the time, Julia Gillard, who was sitting next to the Coalition Premier of New South Wales, Barry O’Farrell who had agreed that the NDIS was a good thing. And, on that day, Julia Gillard said to the whole nation, “I can announce that in the May budget, my government will fund our share for the launch of the National Disability Insurance Scheme.”

“And, here’s the thing that we forget because we live with short memories and short attention spans… two hours later on that very same day, at the, Every Australian Counts rally that was also going on in Perth – Tony Abbott, remember him? Leader of the Coalition and the Australian Parliament said, and I quote, “I am sometimes accused of being a ‘doctor No’. When it comes to the NDIS, I am ‘doctor Yes'”.”

Aaron Carpenter

Aaron Carpenter walked our elected representatives through the reality of these assessments. He knows – he recently participated in the pilot, an experience he described as ‘a nightmare‘. Aaron also did some myth-busting when Warringah MP Zali Steggall said the NDIA assured her and people from her electorate that participants will still be able to submit other professional reports. .

“My biggest concern here is, as has already kind of been explained, if somebody has a cognitive impairment, or a psychosocial disability, or a neurological disorder, and they’re not able to communicate that issue, then this is completely not going to work for them either. I’m somebody that can articulate what was going on, and was pretty clear with the physiotherapist. But they missed most of the information. What I also asked for after that getting that information back was, what kind of draft report this would produce? What kind of draft funding would this produce? And, I was told, no, no, no, that’s not what this is about. This is about a pilot. We’re not providing draft reports. And, I kind of said, well, thanks. But your pilot’s flawed them. Because, A, it’s not a pilot, you’re already rolling it out, you’ve already handed out tenders. And, B, every single one of us that’s going through this process, or sitting here hearing about it, wants to hear the end result.

“And, that is – what plan? And – what support will I get? And – what will that look like compared to what I have now? And the answer is – you’re not gonna get that info.”

MPs and Senators

We invited the MPs and Senators to ask questions or make a short statement at the end. We heard from independent MP Zali Steggall, Labor MP Steve Georganas, and had Greens Senator Jordon Steele-John lined up, but lost him due to an emergency.

Nobody from the LNP government accepted our offer to speak or ask questions.

Media coverage

ABC News
Disability organisations rally against proposal to introduce independent assessments
VIDEO: Disability advocates rally against proposed NDIS changes
Audio: Disability organisations rally against proposal to introduce independent assessments
Audio: Mornings with Alice Walker

The Guardian
‘Not the NDIS we fought for’: disability advocates fear new assessments driven by cost cutting

SBS News
Stuart Robert says there are no plans to halt NDIS reforms, as more groups voice concern

The Conversation
‘Dehumanising’ and ‘a nightmare’: why disability groups want NDIS independent assessments scrapped

National Disability Insurance Agency
Media Statement

The Canberra Times
Disability groups warn against NDIS change

The Chaser
Government adds literal hoops to jump through in order to receive NDIS funding

The National Tribune
NDS calls for rollout of compulsory NDIS assessments to cease

Disability Support Guide
Disability advocacy groups speak out against NDIS independent assessments

The Examiner
Government releases data on average National Disability Insurance Scheme payments

The Examiner
‘A bit scared’: mooted NDIS reforms a source of angst in Tasmania

ABC News
National Disability Insurance Agency criticised for paying $3.7m of taxpayer money to gambling company Sportsbet in rent

Insurance Business Australia
Disability groups warn against changes to disability support scheme

The Mandarin
‘Dehumanising’ and ‘a nightmare’: why disability groups want NDIS independent assessments scrapped

Vision Australia Radio
Leisure Link March 13

The Guardian
NDIS assessments: ombudsman warns against rushing changes

Croakey
‘Dehumanising’ and ‘a nightmare’: why disability groups want NDIS independent assessments scrapped March 16

The Saturday Paper
The NDIS and government controls

ABC Radio Hobart
NDIS Minister Stuart Robert rejects any suggestion NDIS reforms are designed to save money in the scheme

ABC News
NDIS architect Bruce Bonyhady urges rethink of independent assessments

Eureka Street
The fight for the future of the NDIS

3RRR
Uncommon Sense – 23 March 2021

Bendigo Advertiser
Bendigo family fears NDIS independent assessments will jeopardise daughter’s wellbeing

2ser
New NDIS Scheme – More Equitable or Just Cost-Cutting?
Are Independent Assessments a step backwards for NDIS?

Executive Career
Ex-NDIS head slams ‘robo-planning’

DSC
Facts M.I.A. at the NDIA?

Every Australian Counts
An Open letter to Minister for the NDIS Stuart Robert

The Age/Sydney Morning Herald
‘Material changes’ needed to NDIS independent assessments

ABC News
As the NDIS moves to independent assessments, these companies stand to profit from the change
VIDEO: Agency running NDIS defends potential conflicts of interests among contractors

SBS News
Senators question awarding of NDIS contracts as controversial independent assessment reforms loom

The Age/Sydney Morning Herald/Brisbane Times
Leaked laws reveal plan to kick Australians off the $22 billion NDIS

The news hasn’t stopped. Jump over here for an updated list.

Briefing transcript

MARY:
Good morning everyone. I would like to begin today’s briefing by Acknowledging the Traditional Owners of the Lands we’re meeting across Australia. I’m coming to you from Melbourne. And, so therefore, I’m on Wurundjeri Land. And, I’d like to Acknowledge the Wurundjeri People of the Kulin Nation, and pay my respects to Elders, Past, Present and Emerging. I’d also like to Acknowledge that this was, and always will be Aboriginal Land and Sovereignty was never ceded.

Welcome, my name is Mary Sayers. And, I’m Chief Executive Officer of Children and Young People with Disability Australia. And, I’m delighted to be facilitating today’s session, on behalf of all the partners who are presenting to you, this information around NDIS.

Today we have both captions and interpreters for the session. You can use the closed captions button at the bottom of your screen, or you can use the link in the chat to open a separate window. If you require an interpreter, we encourage you to pin the interpreters, so they always show up on your screen, even during the presentations.

They should be on the screen next to me now. And, if you can pin them by hovering over the interpreter’s square, and clicking the three little dots and selecting pin. If you’re having issues, please message, the tech support in the chat. Make sure you’re in gallery view, so that you can see the interpreter and the person speaking. You can do this by hitting the button in the top right hand corner at any time during the session. So, as I mentioned before, my name is Mary Sayers. And, my pronouns are she, her. And, just a visual description of me. I’m wearing a black dress with a red jacket, and wear glasses and have blonde shoulder-length hair.

As I said, I’m the CEO of Children, Young People with Disability Australia. And I’m facilitating today’s session on behalf of the coalition of Disability Representative and Advocacy Organisations, including Every Australian Counts.

We are all very gravely concerned about the proposed method and impacts of the introduction of independent assessments to the worldleading National Disability Insurance Scheme, which to date has had bipartisan and community support.

Thank you to the 43 MPs, senators and your staff for joining with the disability community today, to hear directly about these concerns. We have produced a joint statement of concern about the proposed implementation of independent assessments to the NDIA which has been sent to you. And, we’ll also put a link now in the chat.

So, we’ve had a huge uptake today from all sides of Federal Parliament and the disability community for this briefing. You’ll hear about the genuine lack of consultation, the lack, sorry, the lack of genuine consultation about the introduction of independent assessments, and problems with the actual concept itself. True consultation is not when you make a decision, and then present this as a fait accompli, and only consult on how to implement independent assessments. It’s not the genuine partnership with people with disability on which the NDIS has been built.

So, just in terms of housekeeping, we’re recording this session, which we’ll upload online later. And, we’re going to make this video available for people who couldn’t make it today.

We encourage you to keep your video on. If you don’t want to be filmed, you’re welcome to turn your camera off. And, your microphone is disabled unless you are a speaker. As mentioned before, if you’re having technical issues, please private message our tech support in the chat. And, there is also the chat function today where you can ask questions or make a comment.

We have both Parliamentary Representatives, and the Disability Community online today. And, we know the issue of independent assessments is making people very stressed, and anxious at the moment. And, we know that people are frustrated. However, we do ask that we’re here today to be respectful of each other, and different opinions and experiences.

So now, I’d like to introduce our first speaker. Named as one of the top 100 women of influence in 2009 by the Financial Review, Melanie Tran, whose pronouns are she, her, is a designer and innovator, and an activist and social entrepreneur. She’s also the Chair of Children, Young People with Disability Australia.

So, I’d like to introduce Mel to you now.

MELANIE:
Thank you for the introduction Mary. So lovely to be here today.

MARY:
Now, I’m just gonna ask you a couple of questions. So obviously, you’re a young person, and a social entrepreneur. How does the NDIS help you achieve your goals?

MELANIE:
That’s a great question. I said, when I refer to my support team, or the support network around me, whether that’s my support wages, my medical team, or my allied health professionals, I see them as the engine to my car. And, they are exactly the reason that they enable me to focus on my goals and my aspiration as an individual, as a product designer and as a social entrepreneur, and as a Chair of Children and Young People with Disability Australia, rather than focus on the challenges and barriers that are associated with disability. But I think the biggest thing is that it’s helped me balance the model of disability and focus less on the medical model of disability, but more on the social aspects of disability.

MARY:
Terrific. Thanks Melanie. I guess if you had to summarise from your perspective, what’s the best thing about the NDIS?

MELANIE:
I say from my perspective, the best thing of NDIS is the fact that it’s being referred to as the greatest nation leading, the nation’s greatest leading project. For me personally, it has given me a platform for my voice to be heard. It has given me the flexibility and autonomy to live my life to my full potential with choice and control. And, from the perspective of the sector, we’ve all seen the shift in attitude, and perception and our culture when it comes to inclusion and diversity. And, I think, no matter what role you’re in, every single person in this call today has witnessed firsthand, just how powerful it can be when total control is given to individuals. And, in one way as people with disability, we have the power to dictate how we live our lives.

MARY:
Thanks Mel. And look. We’ll now move on to NDIS. What concerns do you have about a complete stranger doing a three hour assessment on you, and then this dictates your NDIS funding?

MELANIE:
To be honest, when I first found out about the independent assessments, it almost felt as if we’re just grabbing a random person off the streets, and then sitting down with them. And then, we’re at their mercy to dictate how our lives would be or get in and being told by a stranger, what we can do and what we can’t do. And, we all know that’s not true. We all know that. It’s the most powerful when we can tell our own stories, through our own perspectives, with our own voices, alongside those who know us best, if this is our support team around us. And, the most fascinating part of Mary is that I get to combine my own personal perspective. But also hear from what our community has been saying, sort of my role as Chair of Children and Young People with Disability Australia. Just as an example, 80% of the respondents who participated in our recent survey had expressed some concerns in terms of the introduction to the independent assessment. And, at the end there’re four key concerns that really stood out to me was the fact that minimal activities and planning was undertaken to inform the community of the changes, little consultation and feedback has been taken from the community, as well as the absence of a rigorous research and evaluation process before proceeding with decision making that could ultimately change our nation and the way we receive support. But I think the most important one is that the proposed reforms fail to properly address the underlying reasons for the scheme, and introduces unjust and unreasonable mechanism that will limit the ability for people with disability, to have a say in the decisions that impact our lives. And again, I think, the NDIS has been referred to as the nation’s greatest leading project. And, it is our job today to protect and to build on this mission and this vision rather than stripping back the core elements that make the NDIS so powerful and (INAUDIBLE).

MARY:
Thank you very much, Mel. Really appreciate your insights today. We’ll now move on to our next speaker, who is Catherine McAlpine, who is the CEO of Inclusion Australia. So, Catherine goes by the pronouns of she and her. And so, Inclusion Australia is a National Disability Representative Organisation for People with Intellectual Disability and their families. So, Catherine has over 15 years experience in the not for profit and advocacy sectors including leadership positions with Down Syndrome Victoria, Down syndrome Australia, the Australian Federation of Disability Organisations, and VALID. Catherine is also the proud mother of three sons. Her middle son has Down syndrome. So Catherine is going to take us through some of the details of the changes and details of our concerns. I’ll hand over to you now, Catherine.

CATHERINE:
Thanks, Mary. I’d also like to start by Acknowledging the Wurundjeri People of the Kulin Nation on whose Land I am joining you today. And Acknowledge the Traditional Custodians of the Lands across Australia on which we are all meeting. I recognise their continuing connection to land, water and community, and pay my respects to Elder’s, Past, Present and Emerging, and welcome any Aboriginal or Torres Strait Islander People into the briefing today. I’d also like to Acknowledge all the people with disability, their families and supporters, who advocated for so long for the wonderful social change, that is the National Disability Insurance Scheme. And, as CEO of Inclusion Australia, the National Voice of People with Intellectual Disability and their families. I would also like to pay particular respect to self-advocates, the people with intellectual disability who have spoken out so strongly about their experiences and the changes needed. And I’m honoured to be here today as a representative of the Disability Sector peaks, the Disabled People’s Organisations, and Disability Representative Organisations, and their many disability sector supporters and allies who all want the NDIS to achieve what we wanted it to achieve, when we all came together in 2011, to say that Every Australian Counts.

My role is to explain to you why we are also worried about the changes the Australian Government wants to make to our NDIS. We call it our NDIS, because in the two years between the Every Australian Counts campaign, and the launch of the NDIS trial sites, people with disabilities, families, service providers, and the State and Territory Governments worked with the Commonwealth Government to design the NDIS. Through genuine democratic consultations, the NDIS Act and NDIS rules were co-designed with people with disability having real influence. This co-design is reflected in the NDIS Act. It states, “People with disabilities have the right to engage as equal partners in decisions that will affect their lives”. The NDIS Corporate Plan says “putting participants at the center of everything we do”. But in 2020, the Minister for the NDIS announced a substantial package of reforms to the NDIS following feedback collected in the Tune Review Report. The announcement said “New independent assessments will be rolled out is the central source of accurate information about a person with disability support needs”.

Previously, the Minister had discussed piloting independent assessments for people who needed extra evidence to access the scheme. But this announcement made clear that the minister was planning to introduce a new step to the NDIS process for everyone. This would not only determine eligibility, but would also be used to formulate the budget people receive. The minister also stated that he would ensure people with a disability have a seat at the table when it comes to implementing these reforms. However, as the community outcry over the following weekend, and frankly, ever since it showed there were big problems with that announcement. The government had not consulted with people with disability about this new process, what the underlying reasons for it might be, or about the solutions to these challenges. It had decided on its own solution. I want to be really clear on this point. The Tune Review did consult widely and made recommendations. But the government has reinterpreted, even misinterpreted the Tune recommendations.

And ignored important details about independent assessments made by the Productivity Commission Report to suit its own agenda. The Tune Review said that the NDIS should have the power to require some people in some circumstances to have an independent assessment, and that this power should be discretionary. Tune did not suggest compulsory independent assessments for everyone, or that they be used to determine the level of funding. The Productivity Commission did recommend that independent assessments play a role in the NDIS. However, the Productivity Commission also talked about people’s concerns about independent assessments. And, made recommendations about what the NDIS needed to consider. This included people’s aspirations, and the collection of information from multiple sources. The government is changing the way the NDIS works, from a person-centered approach to a one-size-fits-all model. The government has decided to use modified standardised tools, assessments of a person’s function to determine the funding that that person would receive for their support needs.

And, as many experts have since explained, these tools were not designed and are not recommended for this purpose. And, the experience of people who have participated in the pilot has already shown that these reports can be very wrong. The government had already made the decision to use these tools without comprehensive testing on whether in fact they were accurate. And, worked for the new purpose. The pilot used as evidence was very small, and was not independently evaluated. This means that the NDIS has changed the use of standard tools, as well as inventing its own funding algorithm without community transparency or oversight. The immediate outcry occurred because the government broke its fundamental promise to people with disability, to engage as equal partners in decisions. And, at the same time, decided to fundamentally change the person-centered nature of the NDIS. The mantra “Nothing about us, without us” is not a negotiable or a privilege. The NDIS Act – the law – acknowledges this as a right.

Plus, we’re all outraged, because we’ve all been through a one-size-fits-all model before. It doesn’t work. And, the government know this, if I’d asked first or if they listen now. Therefore, the prime rate first, and primary recourse to our government is to stop the rollout of compulsory assessments. And, to co-design a new access and planning process with people with disability, their families, supporters, and the organisation’s who represent them. The announcement about independent assessments said they would provide accurate information about a person’s support needs, but we do not have any evidence that they are accurate. As I said before, many experts and academics have said that the tools used in the assessments, were not designed for this purpose. And, they’re not recommended to determine how much funding each individual needs. The government and NDIA have not told us how assessment results will be used to work out a person’s budget. There has been no consultation or transparency on the formula or tool they will use to translate the results of the independent assessments to a dollar figure.

We have not been told how the level of funding in a package might change. We think it’s unfair that people might miss out on the NDIS or not have their support needs met. We think there needs to be a strong, transparent and independent evaluation of proposed tools and methods to show that they are accurate. I also like to be clear that our worries don’t mean that we are against change. We know that there are problems with NDIS consistency and ease of access. We want the NDIS to be fair and consistent, of course. But we are seriously concerned that these changes will make things worse and not better. We are concerned that the new processes won’t consider the individual needs and circumstances of people with disability, and will get really important things wrong, and will make it nearly impossible to change them. There is an obvious solution. The Australian Government could work with people with disability families and service providers from the beginning. We want to make sure the NDIS is the world leading scheme, we believe we can and should be.

After all, it’s our NDIS. It belongs to our community. We all fought hard to replace the old broken systems that lift people with disabilities shut out. A critical difference is that the NDIS is individualised and personalised. Every NDIS participant should get a plan that supports their unique needs and circumstances. We do not want the NDIS is to be undone in a sweeping reform, especially against the will of the people. We want the NDIS we fought for.

MARY:
Thank you very much, Catherine for that. Just a couple of questions that I wanted to pose to you. You’ve told us obviously about the problems with independent assessments. What are some of the things that people with disability are worried about?

CATHERINE:
there’s just an endless list of things that people are worried about. And frankly, as more information has come out about how independent assessments will be conducted and used, our worries have increased. We’re worried because assessors won’t know a person or spend very long with them. They may not take into account people’s complicated lives and situations, they may even be judgmental about them. We know that many people with disability have experienced violence, abuse and neglect, and exploitation, we needed to have a royal commission, because of this. There are people who have experienced extraordinary trauma. Therefore, we’re worried about that for people working with somebody they don’t know well, will be difficult or damaging for some people with disability. We’re also worried with 60% of the NDIS being people with cognitive disabilities. There are many people who don’t have anyone in their lives who can give accurate, reliable or independent backup information. Many people with disability need assessors with specialised experience and skills.

We’re worried that the assessors won’t have the right experience or skills or training for people with invisible disabilities, or complex disabilities, or First Nations People or People from culturally or linguistically diverse backgrounds, or LGBTQ+ People. We’re worried about the cultural safety of (UNKNOWN), its people and people from all backgrounds. And, that’s just the start of at least

MARY:
Then looking at and obviously, you know, things we’ve heard around, you know, three hours, people can mask their disability for those with invisible disabilities as well. And so, you know, they may minimise their disability or an accurate picture cannot be achieved in that three hours. So, that’s certainly a widespread concern that we’re hearing as well. So, another critical thing that you may have skipped over a little bit, but I just want to explore is around the appeal rights for independent assessments. What do you think this will be? What impact do you think, the lack of being able to appeal, I mean independent assessments will be for people with disability?

CATHERINE:
The impact of not having the right to appeal an independent assessment could be really extraordinary for some people with disability. Because the government has said the results of the assessment can be challenged or appealed, and said that even though it hasn’t been able to prove that the reports and the results will be accurate. And, they’ve also said that the decision not to grant an exemption for an independent assessment will not be a reviewable decision either. So, this has enormous ramifications. So, for example, an applicant will be deemed to have withdrawn their access requests if they don’t complete the independent assessment, and they don’t have an exemption. So clearly, that’s got enormous effects on a person. And, we think this is a terrible way to make big changes. We think it’s a dangerous to make big changes to the life of nearly half a million Australians, of about, as I said, nearly over 60% have a cognitive disability without rigorously testing the impact using the best evidence available.

And, about giving people the fundamental right to appeal the decisions that impact A, whether or not they’re getting the scheme and B, whether they get adequate support from the scheme.

MARY:
Thanks very much, Catherine. Really appreciate you sharing that today. Look, we’re moving on with the agenda. And, there’s the opportunity to ask questions. And, we haven’t yet got too many questions, and you’re welcome to put a question in the chat. But, while we’re waiting for you to think of a question, and also we’ll have an opportunity for our elected officials at the end, if they would like to provide a response to what they’re hearing today or ask questions. So, we do invite welcoming and welcome questions. But, I wouldn’t mind calling on Aaron Carpenter now, who has actually had an independent assessment through the pilots. And, I’m wondering, Aaron, and I can see you’ve made a comment there. So, you’re there. Could you briefly tell us how your experience of the Pilot went?

AARON:
Yep, certainly. So, it was pretty poor from the onset. I prefer communication via email, or received multiple text messages and phone calls. When I finally called through to the provider of the independent assessment, I was put on hold. I was, you know, went through the rigmarole of listening to some really bad music, having to explain myself to four different people, until I finally got through to somebody. And then, when I did get through to them, I was agitated by that point, and asking why I was getting phone calls, etc. And, the first thing that this person said was, can I speak to your support person? I which point I kind of said, Well, if you can’t talk to me then, it’s gonna be pretty redundant, because I’m gonna be the one answering the questions in regards to the independent assessment. So, from there, it kind of got worse and worse. There was a lot of miscommunication via email about what tools would be used. I was directed to go and have a look at the website. When I said not all of us can access websites, or read the information or know what those assessment tools would mean, I was told that was just what was on the NDIS.

Those are the only information I was given. I was told the first name of the person that would be coming to my house, and what time they would be coming. When I arrived, they arrived early, which, for me is pretty catastrophic. I’m autistic, and I do changes in routine. So, having somebody arrive 15 minutes early, threw me in the first place. And, from there, he didn’t identify himself. He just told me that his name was Ben. And, when I asked him what role, like what his qualification was, he told me that he was a physiotherapist. So, when I questioned that and said, what does the physiotherapist know about neurological disorders and assessing it? He told me that he was also a personal care worker, and knew how to take care of people and clean them. You know, literally, needless to say, I was concerned by this point already. But the fact of the matter is my partner and I proceeded with the assessment, partly because I also provide support coordination. And, I really wanted to see what was happening for my participants as well, what was going to happen for them, as well as being a participant myself.

So, we proceeded with it. And, it didn’t get any better. We were told, just to answer yes or no. My partner was told to be quiet because she was rambling. My partner is also autistic, that’s part of our communication probably is, sometimes we do tend to ramble. We’re not very good at social cues or knowing when to stop or to start, really. But when we did answer questions, we weren’t providing any context. There wasn’t kind of like, you know, the context around these questions is to ask you about your neurological function or the context around this is about your mobility, or how you handle situations. There was absolutely no context other than, can you catch public transport would be an example. And, the answer would be yes or no. And, when I went into the context of I can, but it takes a lot of work and planning. And, if something goes wrong, and the bus is late, then that can be pretty catastrophic for me. That wasn’t an answer that was taken, and wasn’t considered. He just went no, he wants, yes or no.

So, there was no context behind my answers. He was here for a sum total of one hour and 55 minutes. And then, he was gone. OK? And, what I did ask for, I asked for the information that had been collected in that assessment. So, I asked for my assessment to be given to me. I was provided with the raw data for that assessment, which was a WHODAS, a Vineland, a Chief, example. So, these are the examples of some of the assessments. But what I can tell you is that some of the stuff that was written in that assessment was incorrect. Either they, A, failed to capture what I had said, or B, ignored it completely. One of the biggest ones for me, and I think the most concerning for me was self-harm. It was listed as not applicable. And now, I can tell you it is applicable. When I have a meltdown and I’m not coping, I hit myself. I hit walls. I head back walls. I tear my clothing off. And, to be told that that’s not an applicable part of your disability that you need support for, just devalidates you as a person.

That it’s the word I use is dehumanising. Because quite frankly, if that is not part of autism, I don’t know what it is for starters. And, my biggest concern here is, as has already kind of been explained, if somebody has a cognitive impairment, or a psychosocial disability, or a neurological disorder, and they’re not able to communicate that issue, then this is completely not going to work for them either. I’m somebody that can articulate what was going on, and was pretty clear with the physiotherapist. But they missed most of the information. What I also asked for after that getting that information back was, what kind of draft report this would produce? What kind of draft funding would this produce? And, I was told, no, no, no, that’s not what this is about. This is about a pilot. We’re not providing draft reports. And, I kind of said, well, thanks. But your pilot’s flawed them. Because, A, it’s not a pilot, you’re already rolling it out, you’ve already handed out tenders. And, B, every single one of us that’s going through this process, or sitting here hearing about it, wants to hear the end result.

And, that is, what plan? And, what support will I get? And, what will that look like compared to what I have now? And, the answer is, you’re not gonna get that info.

MARY:
look. I’m gonna stop you there, Aaron. Just in the nature of time, and I’m sorry to do this to you, because what you’re saying is just so emblematic of the multitude of problems, which Catherine was talking about and giving. So, I just really wanted to thank you for sharing your story. Because, you know, we want this NDIS to be based on the reality of people’s lives. And, it sounds to me like, the situation that you were putting in was both traumatising, and not an accurate reflection of your life.

AARON:
at all.

MARY:
Yeah. So, thank you very much for sharing that. Yeah, really appreciate it. And, some of your comments answers some of the questions in the chat. Like, who are the people who’ve got the qualifications to do this? Will they understand disability? And, it sounds like from the experience that you went through that, that was not the case at all?

AARON:
AARON I’ve got nothing against a physiotherapist doing an assessment when it’s something around a mobility concern, etc. Or, you know, the therapist has a broad exposure to the disability community, and an understanding of it. But, you know, we are individualised, and each of our presentations is unique. And, if somebody has a complex presentation with multiple comorbidities, then the physio was not able to capture a fairly simple guy. So, I’d hate this. I’d be loath to see what he does for something complex.

MARY:
you. Thank you so much, Aaron. And look, if any of the parliamentary staff or MPs in the room today would like to ask a question, you’re more than welcome to ask a question. And, as I said, there is also an opportunity at the end, for you to make a comment or ask questions. Obviously, you know, our community is relying on you as lawmakers when the legislation comes through to fully understand the implications of this. So, I haven’t seen any questions come through, but please, you’re welcome to put up your hand, and ask any questions or make a comment. And, we’ll come to you. So, our next speaker is well known to the disability community, and to many of you. He has been a really instrumental leader in the disability community. So, it’s my great pleasure to introduce Dougie Herd, who is the Executive Director of Community Connections, and one of the original campaigners for the NDIS back in 2012. As an Every Australian Counts champion. Dougie has given me permission because he’s very passionate, if I need to interrupt him and ask him a few questions.

So, I’m gonna hand over to you Dougie, by first asking you the question. Listening to what you’ve heard today, how far away from the original NDIS is what is being proposed here? I’m hoping you’re there Dougie? Maybe on silent?. The key word of 2020.

SPEAKER:
he’s put himself off silent and then back on silent, Mary.

MARY:
Are you there Dougie?

DOUGIE:
Am I here?

MARY:
up here.

DOUGIE:
philosophical question. I don’t know if I’m here. Thank you very much. My name is Dougie Herd. I want to thank you for the invitation to speak. I’m in Canberra. So, I would like to pay my respects to the Ngunnawal Peoples, pay my respects to Elders, Past and Emerging. And then, as briefly as I can, just say a few words from my perspective. I’m Chief Executive of two NDIS registered providers, supporting over 200 people with disabilities here in the nation’s capital. I’m also an NDIS participant. I’m a C6 quadriplegic wheelchair user following a diving accident on a Scottish beach 37 years ago, which can tell you how celiac can be, because you’re Australians, who imagines even Australian anyone goes swimming on a Scottish beach, it’s so cold. But on that day, 37 years ago, I broke my neck in two places. I’m paralysed in all four limbs, and from the chest down. I mean, continent and bladder and bowel. I’ve got limited sensation below the level of my injury, which is my chest line. And, this is permanent.

There’s no cure. The only reason I’m mentioning that here today is because the National Disability Insurance Agency already knows all this information. I gave it to them in a form that they asked me to complete, to have my doctor sign, and for me to submit, when I applied to become a participant on the National Disability Insurance Scheme. The NDIA already knows that I’m eligible, because I’m a person with disability. They know because I’m on my second NDIS plan. Nevertheless, they still propose today that me and 432,500 other NDIS participants, submit ourselves to a compulsory assessment, not an independent assessment, as something to be done by their subcontracting agents who will come to my house, prepare a report, that I’ll not be given and can’t see. I’ll be given a score, a numerical score arrived on by some random allied health professional, who comes, observes me, failed to carry out simple tasks like tying my shoelaces with my paralysed hands, or not being able to make a cup of tea to confirm something that the National Disability Insurance Agency already knows.

To answer your question about how far have we come from the original design from concept to implementation? We’ve come a million miles, if they seriously want us to imagine, we’re going to agree to that. Very briefly, let me remind us all how we got here. Bill Shorten, you may have heard of him. In 2011-12, the newly minted Parliamentary Undersecretary for disability in Julia Gillard’s government asked the Productivity Commission to look at how Australia could improve its disability system. And, in 2011, the PC’s biggest ever inquiry at that time said that Australia’s disability service system was and I quote, “underfunded, unfair, fragmented and inefficient”. And, here’s the thing that really matters for me think about what we’re talking about today. The Governments in Australia, way back in 2011, 12, all of them – Federal, State and Territory accepted without question, the PC recommendation that we needed a National Disability Insurance Scheme. There was cross-party, no party, all party consensus that this was the reasonable and necessary thing for us to do here in Australia to make the system work.

How do I know that that’s true, that there was a consensus? Well, think of it in first week, because we easily forget these things. So, let’s think back to those days when we were building this national project. I was privileged to speak at an Every Australian Counts rally in Sydney on the 30th of April 2012. Think about this consensus-building we’re talking about. Me, a raggedy ass advocate from Scotland, originally working and living in Sydney. I was introduced to the rally by its MC, Tim Fischer, the former National Party Deputy Prime Minister of Australia. I was speaking to an audience at that rally in Sydney of 5000 people, including Prime Minister at the time, Julia Gillard, who was sitting next to the Coalition Premier of New South Wales, Barry O’Farrell who had agreed that the NDIS was a good thing. And, on that day, Julia Gillard said to the whole nation, “I can announce that in the May budget, my government will fund our share for the launch of the National Disability Insurance Scheme”.

And, here’s the thing that we forget because we live with short memories and short attention spans… two hours later on that very same day, at the, Every Australian Counts rally that was also going on in Perth – Tony Abbott, remember him? Leader of the Coalition and the Australian Parliament said, and I quote, “I am sometimes accused of being a ‘doctor No’. When it comes to the NDIS, I am ‘doctor Yes'”.

MARY:
I’m going to interrupt you there Dougie. With your permission, because we wanna give the political parties time to respond as well. But in wrapping up, what’s one key message that you’d like to give to our elected representatives that are on the line today?

DOUGIE:
the process that’s underway. Stop this without its proper consultation. Listen to people with disabilities, their families, their support providers. Continue the consensus that was started many years ago, build, continue to build, and make better the National Disability Insurance Scheme that Australians wanted, voted for. And, most importantly, all of those people in Parliament, every single Member of Parliament, Senator, put down their partisan conflicts and voted to make real here in Australia. That’s what we want. An NDIS works for everyone, and is working for the country.

MARY:
Thank you, thank you so much, Dougie. I could listen to you all day. And, I’m really grateful for the work you’ve done over these years, your legacy of all the people, you know, the NDIS fixed on the shoulders of all of you. And, you know, you are the custodians. And, people with disability are the custodians of our NDIS. So, thank you. We have an opportunity now. And, I can see that there is lots of questions from the audience members about questions around the whole process, which clearly shows that there is still quite a lot of concerns. But unfortunately, today, we don’t have time to answer those, all those questions. But we do have. We will take on board all your questions. We endeavour to provide information back to you. But, there’s an opportunity now for our major political parties to end our crossbench, to respond. And, the first person who is going to do that is Steve Georgiana’s from the Australian Labor Party. So, Steve, I’m hoping you might be able to give us a couple of minutes in response to what you’ve heard today?

STEVE:
certainly will give you a bit of a response. But I just start off by acknowledging that we’re all gathered here today, all around Australia, on the Land of the First Nations People. We pay our respects to those that are Present, Past, and of course, into the Future. And, I think, first of all, thank you for inviting all the members, Members of the House Representative, Senators to attend this very important virtual briefing about these upcoming changes that are, you know, to the National Disability Insurance Scheme. And, I really appreciate hearing everyone from Mary, Catherine, Aaron, Dougie. Hearing firsthand from them, what they need, what they see as the things that are being proposed, and how it will affect them, and what isn’t working, what is working. So, that’s really important. And, I thank all the participants that have taken part for raising those specific concerns about the decision that this government is trying to make to introduce the mandatory independent assessments, which will affect over 430,000 people receiving support currently under the NDIS.

Now, can I just say from the outset, from the very beginning, that the labour opposition federal labour opposition is opposing these changes, we’ve made that quite clear. Bill Shorten has made it clear in the media, in speeches to the parliament. Anthony Albanese has done so, and Surabaya raised many times in the media and in Parliament, when we’re putting up motions, etc. We know that, independent assessments, absolute radical change from the current system, where evidence for persons usually, you know, allied health professional informs decisions about the level of support or persons in NDIS plan. Now, the government says these independent assessments will fix consistency and fairness. That’s their right, that’s what they say. Now, we know it’s true that the NDIS decisions can occasionally be inconsistent. Often these decisions result in unfair outcomes. And, I see people regularly that come to my electoral office, when some of these decisions have been made. The opposition, the federal opposition leader, Anthony Albanese, and Bill Shorten, and many experts, consumers, advocates that are very concerned.

And, we heard the people that spoke today are very concerned. Yeah, I’m worried that it will make it harder to access the scheme. Instead, it’ll allow the government to restrict, reasonable necessary supports to people on the scheme. Now, we’ve heard from many people, like the people that referred y care and service providers, representatives that the government has not consulted, hasn’t consulted before announcing it was going to introduce these independent assessments. That’s really important, because one of the fundamental principles of the NDIS was to consult. And, in this case, it’s quite clear that that hasn’t happened. The government as well has told that the independent assessments should not work. Yet the sector’s made it quite clear, they’ve said it, we heard it today, that it just won’t work. It’ll create more bureaucracy, for people. And, more hurdles that people will jump through to get to the end result. So, you know, what I’m hearing is that many are fearful that it’s just a number.

It’s just another standardisation, I suppose, scheme. And, we heard from Aaron, quite clearly. I think Aaron put it together really well. It’s

MARY:
I’m gonna have to interrupt you there to give some of our other elected officials a chance to ask questions. Because, you know, obviously, we welcome that you really deeply understand the issue. So, thank you.

STEVE:
I just say very quickly that, you know, we’re going to continue to oppose this. We’re going to continue to hold the government to account. And, to make sure the NDIS is properly funded, number one. And, properly staff, number two. And, it provides support that Australians with disability deserve.

MARY:
Thank you very much Stephen

STEVE:
you

MARY:
MARY appreciate you being online. And, any other MPs, or elected officials, senators are welcome. I know we’ve got both Zali Steggall and Jordon Steele-John online. And, if either of you would like to make a comment or response. Zali, you’ve got your hand up. And, it can be a question. It doesn’t have to be, you know, a definitive at the moment. But yeah, so I’ll hand over to you, Zali.

ZALI:
you very much. And, thank you very much for hosting this. Thanks for the information, and for everyone’s contributions. We actually locally recently held a online forum on with the NDIA about these changes to try and help my local community and constituents. And so, in during that forum, the NDIA assured me and participants, that additional information would be considered during after assessment, not just the independent assessors information, so that a participant could bring other information. So, I was really curious to know whether that was the experience of the participants in the pilot. Were they able to bring additional information?

MARY:
I’ve got Aaron shaking his head. But Catherine’s probably got a good sense of the the process. Because many organisations like ours have been hearing what the NDIS is saying, and what’s happening underneath the surface is probably a little bit different to that. So, Aaron, unless you’d like to answer that one you. You shook your head, but as well as Catherine

CATHERINE:
OK. It’s Catherine here. I’m just looking and watching Aaron. Yes, the NDIS have said that other information couldn’t be available. But we haven’t got any evidence that that happened in the pilot. Because as Aaron said, they haven’t shown what the result was. So, they’ve said they’ve been doing a pilot, they’ve asked questions like, was the person polite to you? Did you feel respected? Did you feel comfortable in the appointment? And so, people report similar things to Aaron. Yes, the person was nice. The person was perfectly, you know, I felt respected as a person in the meeting, but I didn’t feel respected by the process. And then afterwards, I got a report that I didn’t think reflected my support needs. And then, I wasn’t told what impact would that would have on my plan. So, the real answer is, we’re not sure. Because they haven’t told us what the impact on the plan, on what the entire impact on the plan will be. The other issue

ZALI:
I ask, was Aaron able to bring further. So, it was indicated to us during the forum that a participant would have to do the independent assessment, there will be flexibilities around it, but they will also be able to put forward the information that they maybe traditionally would have had available towards their assessment as well. It was pitched, I agree with different perspectives. But it was a pitched that the independent assessment was to fill the gap in areas where people were not able to bring forward sufficient information for their needs.

CATHERINE:
that would go back to when independent assessments were started, they talked about it being for some of the people, some of the time. So, if people needed, if people couldn’t access reports, then I could do it. So, that’s why in August, or even earlier on when it was mentioned, it was like, Oh, well, that sounds OK. I’m sorry, not in August, when the original speech was made. It was like, Oh, no, that’s good. If they’re gonna pay for assessments for other people, that’s great. But then what happened was they’ve said, No, it’s for 100% of the people, 100% of the time, and it’s gonna be for your planning. So, we would, you know, I think no one’s gonna argue on the issue of equity. I think the issue is that we were not consulted on the solutions. And, one of the obvious solutions that was never trialed was to pay for your local reports. You know, just pay for the existing, you know, here’s a standard report, go to your local GP or go to your local allied health people and get the report from them.

That’s never been true. And, the NDIS could pay for it. That’s never been trialed. Yes. As an alternative solution.

MARY:
And, I’m going to stop you there Catherine. And, give Aaron an opportunity to answer. But certainly, the notion that an independent assessment will then dictate your budget is very clear. So, Aaron, in answer that question, were you asked for any information, other additional information?

AARON:
And, I offered it. So, I did mention some of the things that had been. So, I guess this was a little bit, you know, duplicitous of me when I found out that I was going on well. When I volunteered to do the independent assessments, I also had my own functional capacity assessment done by an independent OT, because I wanted to compare apples and oranges, I suppose. So, I already had that functional capacity assessment done by an OT, to go back to and go, OK. So, I can look at how those two things stack up. When I suggested, you know, what do you do if you wanna talk to my trading psychologist, my support workers, my OT, in regards to some of the information you might want to get? He said, No, it’s not relevant. We’ll just do it here now. And, even things like the context that I have five people in my home with autism, obviously, that has an impact on every single one of us. It’s a little bit different. I was told that the assessment was about me and no one else in the house, even though that’s an environmental factor, obviously.

So, I would say that the answer for me personally, in my experience is No, they don’t want to hear about anything else.

MARY:
And look, like there’s been a comment in the chat from Fiona Shaco, who represents the autism Alliance. Many participants have asked if an independent assessment could be done by a practitioner, or a professional who knows them well? Who knows their story, who knows their disability, who knows their environment and flat out refusal of that has happened? So, yeah, so I guess that, you know, that ability to deeply know a person is being completely minimised through this process. I’m just wondering, Zali, did you have any follow-up questions and I know Jordon has got some questions as well.

ZALI:
No, that’s interesting thing Thank you very much.

MARY:
Thank you very much, Zali. And, Jordon, did you have any questions or comments that you wanted to add in? Jordon Steele-John is very well known to people in the disability community. So, probably needs no introduction. Just want to check if Jordon is still on the line. I know he had a question. He might have made it to drop off.

Was there any other comments or questions from any of our elected officials that they’d like to make? We haven’t heard anyone from the Coalition. Welcome for you to ask questions of anyone who’s on as well.

Well. If there’s no further questions, we might wrap it up. Because we’re only up to our hour. I’d really like to thank all our speakers today. I’d like to thank Mel, Aaron, and Dougie who are NDIS participants, and who have really shed a lot of light on this, and what it’s going to mean in your lives. Also like to thank Catherine. And also, like to thank all the parliamentary staff. We know there’s a lot of MPs, senators and staff online. And also, everyone from the disability community.