Thread by @EveryAustralian

The #NDISJSC is holding a public hearing into #NDIS compulsory assessments today from 9am AEST, with @Adv4Inclusion, @MHCCACT, @sdmrights, @CarersACT, @emmadavidsonACT, @dougie_herd and more. #HandsOffOurNDIS
Tune in from aph.gov.au/Watch_Read_Lis…
THREAD

First up this morning is @Adv4Inclusion, @MHCCACT, @sdmrights. #NDIS #NDISJSC

We are united in our concerns about the introduction of proposed mandatory independent assessments. Reduce dignity, choice and control and wellbeing. We don't believe they will address the issues. Over-simplistic assessment tools untested - @Adv4Inclusion #NDIS #NDISJSC

The deficit model does not align well with the recovery model of psychosocial disability. - @Adv4Inclusion #NDIS #NDISJSC

People with disability have not been sufficiently included in consultations. - @Adv4Inclusion #NDIS #NDISJSC

Chair Kevin Andrews MP summarising from Tuesday's hearing - he may be confusing part of the NDIAs outline of the existing process with the new process (they were not very clear on the distinction) - #NDIS #NDISJSC

I would certainly have concern about the 400 'personas' and how they were developed. Still very worried individual circumstances will not be captured. - @Adv4Inclusion #NDIS #NDISJSC

The government are looking to redefine reasonable and necessary not based on the individuals but on the personas - we are seeking further info about all of that. - Kevin Andrews MP #NDIS #NDISJSC

People with disability need to have trust - everything is decided in that 3-hour assessment with a stranger who may only have 12 months experience - ADACAS #NDIS #NDISJSC

This is such a fundamental shift in the way the NDIA does things. It is not acceptable to have the level of outcry from everyone saying stop this approach, it will create new issues - we will work with you to find new solutions. This approach is not adequate - #NDIS #NDISJSC

Kevin Andrews agrees personally that such significant changes should include appropriate consultation and co-design - #NDIS #NDISJSC

We're concerned about all of the previous comments too. How will these assessments actually be independent? - @MHCCACT #NDIS #NDISJSC

.@Jordonsteele giving more info about they know about the 'personas'. 400 developed by the Scheme Actuary and 'ex-academics' (don't know who), with 6 'domains' (like age, location, not sure what else). The committee have asked for more information - #NDIS #NDISJSC

Concerned about the snapshot/moment in time nature of the assessment because it will result in funding for the next few years - and disability fluctuates over time - #NDIS #NDISJSC

It's an open question about whether you can provide additional information or not. If we're confused... - @Jordonsteele #NDIS #NDISJSC

The entire model raises a whole series of concerns. Responses have been to adjust the model rather than looking at the problem with the entire model. It's such a major reform, and despite the outcry they have not agreed to go back to the drawing board - #NDIS #NDISJSC

So they are not saying "should we do this?" - @Jordonsteele #NDIS #NDISJSC

Following the NDIAs 'Have your say' consultations they said feedback "will help shape how these assessments will be implemented" rather than IF they should be implemented - #NDIS #NDISJSC

How will these changes perpetuate disadvantage? @AliciaPayneMP #NDIS #NDISJSC

Case study. Jill presented well, approached AFI for help. Lots of difficultly with trust - 10 months before she would share info with me, her advocate. She often answered yes or provided learned answers even if not genuine. Masked difficulties - @Adv4Inclusion #NDIS #NDISJSC

In Jill's planning process there were lots of miscommunications - tried to make it a positive experience. The only reason things were picked up was because I, her advocate was there, and had been working with her for previous 12 months - @Adv4Inclusion #NDIS #NDISJSC

She didn't understand what was happening. She didn't know she had autism. Psychologist said flew under the radar because she presented so well, masked. Values independence, wouldn't seek support for the IA. Would be highly incentivised by the money for the pilot - #NDIS #NDISJSC

Concerned the assessments don't have nuance to investigate further. In order to ease her distress, she is likely to answer in the positive, trying to elicit positive responses from the assessor - @Adv4Inclusion #NDIS #NDISJSC

Inconsistencies with Jill only became apparent to me after about a month. - @Adv4Inclusion #NDIS #NDISJSC

Independent assessments will only come AFTER you meet the eligibility requirements - gathering information including reports like assessments. It adds a step, adds a hurdle, and reduces the ability for planner and participant to shape the plan - Lauren #NDIS #NDISJSC

When you are in a situation where you have to 'perform' like in Jill's example, people will perform in a way they think they have to. - @MHCCACT #NDIS #NDISJSC

The deficit model of the scheme does not support the recovery model. It will create stress and trauma - @MHCCACT #NDIS #NDISJSC

The independent assessment process is very distressing - moment in time that determines their funding. To make sure they can have a shower, or go out into the community, or participate in work, support families. It is like Prof Bonyhady said - robo-planning. Lauren #NDIS #NDISJSC

Plans need to uphold the rights of people with disability. - Lauren #NDIS #NDISJSC

On Tuesday the Minister completely rejected claim that the community is united against proposed changes. Are you aware of any organisation who is in support? @AliciaPayneMP
No. No organisations or individuals. Wendy #NDIS #NDISJSC

I have not heard of anybody who is in support of the changes. - @MHCCACT #NDIS #NDISJSC

Very, very disappointed in lack of consultations. - @MHCCACT #NDIS #NDISJSC

Several ACT advocacy orgs wrote to former NDIS Minister Robert. Received response from Minister Reynolds - no offer for consultation from us @Adv4Inclusion #NDIS #NDISJSC

We heard from the media that there was a pause. But we've heard today from this committee about new developments. @MHCCACT #NDIS #NDISJSC

We've only heard about some of the changes because a leaked version of the draft NDIS Act to the media, one of about 80 versions. ADACAS #NDIS #NDISJSC

I asked the Minister about the changes to reasonable and necessary. She said it had to change, like in other types of insurance schemes. Wants 'a better definition'. @AliciaPayneMP #NDIS #NDISJSC

There are so many changes being put forward. We all want to work with the Minister and NDIA to make sure the changes are aligned with the intent of the scheme and the rights of PWD. The impact of changing R&N definition would be considerable. Work with us - ADACAS #NDIS #NDISJSC

We have a human rights framework - the UNCRPD. We don't need to start from scratch. #NDIS #NDISJSC

Section 19.4 describes principles that underlie section 34 reasonable and necessary. We are still in a situation where peoples needs are individual, environments, broader social contexts @Jordonsteele #NDIS #NDISJSC

On page 10 @Adv4Inclusion submission you describe similar policies in other jurisdictions adverse effects - like in the UK, increased suicide risk. @Jordonsteele
In the UK stringent functional assessments linked to adverse mental health outcomes. #NDIS #NDISJSC

A mental health specialist recommended a person who is likely to be eligible for the NDIS not apply because any support provided would not outweigh the adverse effects of the system. @Adv4Inclusion #NDIS #NDISJSC

Double standards from the NDIA because other parts of the NDIS require you get a functional assessment from an allied health professional you have had a relationship with for at least six months. @Jordonsteele #NDIS #NDISJSC

I find the system to navigate. I am well educated, well supported - how are other people getting through all of this. @MHCCACT #NDIS #NDISJSC

Kevin Andrews reads correspondence from NDIA CEO saying they will release more information about the 'personalised budgeting tool' (the algorithm, robo-plan generator) - #NDIS #NDISJSC

That's it for @Adv4Inclusion, @MHCCACT, @sdmrights, @CarersACT today. Next up is ACT Disability Minister @emmadavidsonACT, Community Services Directorate ACT and advisory group chair @dougie_herd - #NDIS #NDISJSC

I have received significant community feedback on independent assessments. I have raised these concerns with my commonwealth counterparts. I am deeply concerned with lack of consultation. -@emmadavidsonACT #NDIS #NDISJSC

I have not seen detailed information about the assumptions behind the costs. I used to manage a budget for Navy - when there was an underspend we rolled over additional costs into the next year. This should have happened with the NDIS in 2019. @emmadavidsonACT #NDIS #NDISJSC

The assessments were not tested for ethics or validity before the pilot began. The fed govt has a responsibility. It would not pass a university ethics test. @emmadavidsonACT #NDIS #NDISJSC

It is unfathomable that we would roll out a trial that would increase suicide risk (quotes @Adv4Inclusion submission about UK suicide stats) @emmadavidsonACT #NDIS #NDISJSC

The framing about the future of the NDIS should not be just about cost - which frames people with disability as a 'burden'. People with disability add so much value to our community @emmadavidsonACT #NDIS #NDISJSC

The NDIA must co-design to make sure changes is fit-for-purpose and so the scheme delivers on its original intent of choice and control. @emmadavidsonACT #NDIS #NDISJSC

We need more support for ILC, planning, etc to support people with disability @emmadavidsonACT #NDIS #NDISJSC

The panellists here have decades of experience in disability and disability policy - @emmadavidsonACT #NDIS #NDISJSC

Kevin Andrews quotes Minister and CEO on scheme costs and comparison with the 2017 PC report. Do you agree the sustainability needs to be looked at #NDIS #NDISJSC

We need to keep the focus on the people this whole system is meant to be supporting. I haven't seen the detail about the costs, so it's hard for me to speak to. But when people don't have the support they need the ACT govt has to cover the gaps. @emmadavidsonACT #NDIS #NDISJSC

We are looking forward to seeing the detail (the assumptions behind the cost projections). - Christine #NDIS #NDISJSC

The difficulty is that the cost details (underlying projections) have not been shared with state and territory disability ministers. We're not being provided transparent information. We are expected to trust the fed govt without it. @emmadavidsonACT #NDIS #NDISJSC

We have asked for the assumptions here at the #NDISJSC and at Senate estimates. We haven't seen anything. I would have assumed the DRC, disability ministers - partners in the scheme - would have seen that @Jordonsteele #NDIS #NDISJSC

Kevin Andrews: We learned more on Tuesday about how this model is expected to work. Says default tool will be WHODAS (again think he's confusing existing process with new proposal), assessment goes into persona or box to generate funding. Have you heard about that? #NDIS #NDISJSC

What about life goals? To put someone into a box sounds like a very risky thing to do given how diverse people with disability are @emmadavidsonACT #NDIS #NDISJSC

I was not aware of these details. @emmadavidsonACT
People with disability know significantly less than all of you do - part of the problem. People with disability contributed thousands of hours of time to set up the scheme 10 years ago. @dougie_herd #NDIS #NDISJSC

As a participant, advisor to the ACT govt, as CEO supporting 200+ participants, and someone who worked at the NDIA 10 years ago... nobody is putting me into a box. I am an individual with rights under the UNCRPD enshrined by this govt @dougie_herd #NDIS #NDISJSC

I am not having some recently graduated speech therapist come into my life and ask me if I can make a cup of tea - give me a score either yes or no - the answer is more complicated than that. The NDIS Act 2013 states I must be treated as an individual @dougie_herd #NDIS #NDISJSC

Go back to the system that began with the 2011 PC enquiry, led to bilateral agreements, led to the launch of the NDIS by Kevin Rudd whose speech I had to read and make sure was not factually incorrect ... @dougie_herd #NDIS #NDISJSC

Don't keep information secret from the state and territory ministers. Don't keep it from people with disability. Don't say "we're only doing what the 2011 PC report said" @dougie_herd #NDIS #NDISJSC

We have in this room two men with beards using wheelchairs. One is a Senator, the other is me. I have no idea what is reasonable and necessary for @Jordonsteele, we should not be put into the same box. @dougie_herd #NDIS #NDISJSC

Want to save a third of a billion dollars? Stop this ridiculous process. @dougie_herd #NDIS #NDISJSC

The CEO keeps changing the story about what's motivating this process. When the Minister moves on, when the CEO moves on, I will still need someone to come through my shower door and complete a complex bowel procedure. It is super personal. @dougie_herd #NDIS #NDISJSC

If they don't consult we will go back to the old broken system this was meant to replace @dougie_herd #NDIS #NDISJSC

As a state and territory Minister has there been consultation with you? @AliciaPayneMP
I have taken every opportunity to push for community co-design. There has to be trust. Community says trust can't happen while the pilot is on. @emmadavidsonACT #NDIS #NDISJSC

The independent assessment pilot did not stop or pause. They continue to add new information. I have said to the Minister we need those things to stop happening so we can have clear air and trust @emmadavidsonACT #NDIS #NDISJSC

10 years ago states, territories, the commonwealth and the NDIA sat down with people with disability and said "how do we build this scheme recommended by the PC?" The result was a genuinely ground-breaking initiative Australians are proud of @dougie_herd #NDIS #NDISJSC

Minister and CEO sit down with @EveryAustralian and the community. And the DSS funded advocacy organisations. Have an expansive community consultation. And while that's happening do not do anything irreversible. Cut the contracts with the assessors @dougie_herd #NDIS #NDISJSC

Don't impose upon us some market constraint and call it 'independent assessments'. They're not independent. They're not assessments. Look at the tender documents. Let's stop pretending. The story keeps changing. @dougie_herd #NDIS #NDISJSC

Stop saying the Tune review recommended this $339m, 8 organisation contracted tender. Stop lying to us. Stop it. Open up and talk to us. It's dead simple. @dougie_herd #NDIS #NDISJSC

Forgive me, I'm a bit of a smart ass. This sounds like a very bad remake of The Godfather. "Made him an offer he couldn't refuse. Sign or we'll blow your brains out" @dougie_herd #NDIS #NDISJSC

One of the arguments for the NDIS was the old system was financially unsustainable. We now have an additional 1% GDP. @dougie_herd #NDIS #NDISJSC

In my old life as a social researcher to get genuine consultation, you have to start with "there are no predetermined answers, everything's on the table". "What are we trying to achieve here? What are the problems?" @emmadavidsonACT #NDIS #NDISJSC

Have you heard of any risk analysis about combining the assessment tools in this way? @Jordonsteele
No. @emmadavidsonACT #NDIS #NDISJSC

I have worked in this area - university ethical guidelines. I have asked the NDIS Quality and Safeguards Commission what happens if the pilot goes wrong? They said they can take a complaint but that's not enough. @emmadavidsonACT #NDIS #NDISJSC

The PC report said they were not aware of any tools that would be appropriate for the assessments. But the NDIA says the tools do exist. But they're combining them in a way for which they were not designed. Not how they are describing them @dougie_herd #NDIS #NDISJSC

When I worked for the NDIA I went around during launch, speaking to hundreds of PWD. I was required to say "The NDIS will treat you as the individual you are, with no assumptions, give you reasonable and necessary supports you need" @dougie_herd #NDIS #NDISJSC

As a commonwealth public servant I was also required to say "You will only have to tell your story once." The NDIA already knows I am a quadriplegic. The agency accepted my access request. @dougie_herd #NDIS #NDISJSC

There was not a scintilla of empathy bias. APS code of conduct. NDIA values statement. Service charter. All of those frameworks exist as a term of condition of their employment. Minister said she is concerned empathy bias from public servants is a reason for IAs #NDIS #NDISJSC

I think 'empathy bias' has been cooked up by EL1 and 2s, the Minister's office, the CEO. To shut up 'rabid advocates'. No evidence anywhere for empathy bias. Stop saying it. It's not true. @dougie_herd #NDIS #NDISJSC

If we're not providing appropriate supports for people through the NDIS we pay for it in other areas: housing, justice, health, etc. Need to work with commonwealth and other schemes collaboratively @emmadavidsonACT #NDIS #NDISJSC

That's it for @emmadavidsonACT, Community Services Directorate and ACT Disability Reference Group Chair @dougie_herd. 10-minute break followed by short statements from people with disability and families. #NDIS #NDISJSC

My assessment by a clinical psychologist was very limited. Did not refer to my goals. I was asked to make a cup of tea. The report said I was highly articulate. Mobility was NA. It did not record important things - Jeffrey Smart #NDIS #NDISJSC

I was embarrassed and belittled. - Jeffrey Smart #NDIS #NDISJSC

I do not recall any questions from the assessment that would have informed early intervention. The only reference in the report was that I use orthotics to reduce fall risks. - Jeffrey Smart #NDIS #NDISJSC

The independent assessor did not document my impairments even when pointed out. My report was inaccurate and incomplete. - Jeffrey Smart #NDIS #NDISJSC

I am anxious, angry and very tired. The assessment left me feeling very dejected (said through some tears) - Jeffrey Smart #NDIS #NDISJSC

It's really hard and really stressful. I helped get the NDIS up and running through the @EveryAustralian campaign (thank you Simone!) so this is all very disappointing - Simone Stevens #NDIS #NDISJSC

They started to do the independent assessment. My 7 year old grandson became very anxious. It was hard for him and his mum to understand the process - no-one explained it. The first thing they did was ask him to read and draw. - Teena Roberts #NDIS #NDISJSC

He struggles with that. Started to meltdown. 30 minutes in assessor said "we don't need you anymore Thomas". He was distressed, thought he did something wrong. Later my daughter said she would stop the assessment. - Teena Roberts #NDIS #NDISJSC

They didn't read anything first. She knew nothing about the assessor. Do they have experience with children? She got up closed down the computer. - Teena Roberts #NDIS #NDISJSC

I was so appalled when I heard the NDIS Minister say 'empathy bias' is a problem. It is callous. - Teena Roberts #NDIS #NDISJSC

We don't know what the qualifications of the assessor were. We don't know which tools they used. - Teena Roberts #NDIS #NDISJSC

The assessor fluffed around a bit when my daughter said she wanted to stop, before she burst into tears. It wasn't clear that we could stop. - Teena Roberts #NDIS #NDISJSC

I was there looking after the other children and was asked to identify myself and the twins - another privacy concern. - Teena Roberts #NDIS #NDISJSC

I am a 21-year old NDIS success story. I have had many labels, put-downs, hurdles. I have an incredible support team. I wish to acknowledge and thank the NDIS for allowing me to do things differently. - Molly (via supporter) #NDIS #NDISJSC

Meet my psychiatric assistance dog Zully. Within weeks she was able to tell something was up, even before I could. She could rapidly de-escalate a meltdown. It's impossible to have a meltdown while cuddling a licky puppy. - Molly #NDIS #NDISJSC

She is a full-time support saving over $250 per annum. She is my independence. Without the NDIS I have avoided justice, and instead found advocacy, support. In a planning meeting a planner said Zully was a 'pet' - Molly #NDIS #NDISJSC

The planner said my funding would be reduced because I did not use the entire package last time. Since that 'check-in' I can not leave the house. I am worried someone will take her away from me. - Molly #NDIS #NDISJSC

Why isn't there recognition that participants have life-long challenges? - Molly #NDIS #NDISJSC

Molly's mum. This is a girl who at the beginning of the year was totally focussed on uni - look at her now after that meeting (she is very distraught). #NDIS #NDISJSC

Kind and warm words for Molly from Chair Kevin Andrews MP. #NDIS #NDISJSC

The NDIS would not fund Zully "because Zully might harm others, and Molly might harm Zully". An independent assessment will not work for Molly. Molly's mum #NDIS #NDISJSC

Myself and @AliciaPayneMP and this committee will do everything in our power to support you as best we can. @Jordonsteele
@AliciaPayneMP reiterates she will support them too as their local MP. #NDIS #NDISJSC

Context is everything with disability. I can see no way for context to be considered in these independent assessments - Leslea Geary #NDIS #NDISJSC

The talk about sustainability from the Minister and CEO is all about cost cutting - Leslea Geary #NDIS #NDISJSC

The #NDIS has been good for my daughters. Carefully structured plans, a whole team of allied health professionals making informed recommendations, helping them become independent. - Leslea Geary #NDIS #NDISJSC

The Minister is disingenuous making claims about 'empathy bias'. - Leslea Geary #NDIS #NDISJSC

No one therapist or specialist is going to be across all fields. It's impossible. Which therapist will be assigned for my children with multiple specialists. No-one should be required to do assessments in an area they do not have expertise - Leslea Geary #NDIS #NDISJSC

My son wants to be liked. If he is having a good day he will say he is fine. His plan will be insufficient. What if he refuses to engage at all? Will he be no longer eligible? Wait in limbo? This has kept me awake many many nights. - Leslea Geary #NDIS #NDISJSC

This is not fair, not consistent. Independent assessments based on a single moment in time will not work. Outcomes will be arbitrary. It will be a lottery. - Leslea Geary #NDIS #NDISJSC

I have never seen my son in his 29 years make a cup of tea. He might be able to get up and do it. Does that mean he can cook a meal? What will they extrapolate from that? - Leslea Geary #NDIS #NDISJSC

Independent assessments as proposed are an only exercise in expediency - reducing the time and money the NDIA spends on planning. Independent assessments are not fair, not consistent, not welcome. - Leslea Geary #NDIS #NDISJSC

My daughter is the only person in the world with her gene variant. She has multiple disabilities. Her needs can not be summed up in three or even 5 hours. They would have no idea. To discount the expertise of her professionals is a waste - Tracey Gorman #NDIS #NDISJSC

I am worried about what the process will be if we do not agree with the information recorded in the assessment. This will be disastrous. People will fall through the cracks. This is negligent. - Tracey Gorman #NDIS #NDISJSC

We struggle enough with the never-ending NDIS changes, red tape, hurdles. - Tracey Gorman #NDIS #NDISJSC

The generic format of the independent assessments is inappropriate for people like my daughter who has complex needs. There needs to be room for context, not just yes or no boxes. - Tracey Gorman #NDIS #NDISJSC

I'm not a politician. I'm not a public servant. I am a carer fighting for my daughter's rights in the time together we have. - Tracey Gorman #NDIS #NDISJSC

That's it for the #NDISJSC Independent assessments hearing today. The commission will be back at 1:20pm AEST for a hearing on the #NDIS Quality and Safeguards Commission. You can tune in from aph.gov.au/Watch_Read_Lis…