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Behind the scenes of a powerful campaign: a case study in effective advocacy

Advocates for the rights of people with disability have long experience in successful and high-impact campaigning.

Below, the Every Australian Counts campaign shares some of the backstory to their recent success in fighting off the Federal Government’s plans to introduce independent assessments under the NDIS.

The article is a summary from tweets by @EveryAustralian while guest tweeting for @WePublicHealth during the week of 26 July. Warm thanks to @ainehillbilly.


Every Australian Counts writes:

We’ll be talking all things NDIS – the National Disability Insurance Scheme – past, present, and future – and why the NDIS matters for every Australian.

A look at Independent Assessments and the NDIS – why they were a threat to the NDIS and the lives of people with a disability – and the MEGA efforts of people with a disability and supporters to fight and win the battle to get these dumped. And what next… #MakeTheNDISWork

In September 2020, it became public that the Government, led by NDIS Minister Stuart Roberts had been working for some time on introducing ‘independent assessments’ to the scheme. This was shared via the Government’s response to the Tune Review.

For background, the Tune Review looked at changes that could be made to the law to streamline NDIS processes, remove barriers to positive participant experiences and introduce the Participant Service Guarantee. More here.

The review did not consider changing the design or intent of the NDIS. Rather it looked at sensible and practical measures about how the scheme was, or rather, was not working on the ground. For example, participants said the scheme was too complex, too confusing and difficult to navigate.

Plus they said they were frustrated by lengthy delays and inconsistency in decisions and outcomes. All up, the Tune Review made 29 recommendations to improve the NDIS. There was no mention of independent assessments.

Some history

Back to September 2020 and the Government’s response to the Tune Review; it accepted the recommendations but also added that independent assessments would be introduced from 2021 for people coming into the scheme and at key review points.

It also came to light that the NDIA had already gone out for tenders for organisations to conduct these ‘independent assessments’ – all before any consultation with the disability community. Plus the assessors will use standardised assessment tools.

And they won’t be just any old tool lying around – they will have to be the ones that the NDIA have chosen. The NDIA said they had chosen about 60 tools for their toolkit (but they didn’t say which ones yet).

These assessments would take somewhere between one and four hours (on average). And that time should include writing a report. In some cases, face-to-face time with the assessor might be as little as 20 minutes.

And so began the disability community’s concerns about ‘independent assessments’ (IA), the Government’s overall plans for the NDIS, lack of transparency about pilots, a rushed roll out of IA & cost cutting. This was all happening whilst COVID-19 was playing havoc in so many people’s lives.

While there had been general agreement that the NDIS needed to be fair and consistent, by the community and Government, Every Australian Counts asked if this was really the best way to go about making things more fair and consistent? Were other approaches considered?

Concerns rose that IA would do nothing but add yet another layer of stress and hoop jumping in a scheme that is already full of meaningless red tape that the assessors will just use a “tick a box” system that won’t take into account everyone’s individual circumstances.

Plus as time went along, it also became clear that Minister Roberts also wanted to make fundamental changes to the NDIS Act – about what was ‘reasonable and necessary supports’ – undermining the very individualised nature of the NDIS.

If the NDIS Act was to make a list of what was in and what was out when it came to support, it would fundamentally undermine choice and control. What is reasonable and necessary for one person might not be reasonable and necessary for the next. More here.

Alarm bells

And as more and more was uncovered about IA, what became crystal clear is that this new compulsory assessment will be the only thing that determines your NDIS plan and budget and planning as it was known would be out the door.

And, while the removal of dreaded NDIS access lists seemed like a good move, it opened a whole can of worms about just how independent assessments would be used.

Alarm bells went off for this news: You won’t even get to see a copy of the assessment unless you ask for it. You will only be given a summary. If you don’t agree with what is in the assessment report you won’t be able to challenge it.

We were hearing from more and more people deeply concerned about having to see ‘strangers’ for assessments, the tick a box style approach to working out support needs and why all these changes were happening so quickly.

Together we began to contact Members of Parliament and encouraged people to make their voices heard. In December 2020 The Joint Standing Committee announced they would hold an inquiry into the use of independent assessments in the NDIS.

Every Australian Counts collated stories. We wanted the Committee to understand why we were so worried – and what we want them to do about it. These changes were going to be introduced without consultation. Without scrutiny. And without people having their say.

Along with submissions to the inquiry, Every Australian Counts wanted every single MP and Senator to hear people’s concerns too – these changes to the NDIS could not go unnoticed.

Speaking up

Every Australian Counts was clear that it didn’t matter how you spoke up – but that you spoke out and had your say. Everyone had fought hard for the NDIS and we all wanted it to work for everyone who needs it.

Keeping up with things became key, the NDIS was also doing consultations – assessments and access assessments and planning support for young children and their families. Again, we encouraged people to speak up and people kept voicing their concerns.

As we said – long or short, it does not matter – the most important thing is that they hear directly from you about what’s working, what’s not, and what needs to change.

Every Australian Counts is always impressed by the growing numbers of people who speak up, and the resolve of the disabled community, who time and time again are asked to share their stories – regardless of the toll this takes.

Much of our work is supporting the Every Australian Counts community to stay across the many policy developments, proposals, changes, submissions, which can be hidden in many places or buried in jargon. We are always watching, sharing info, asking questions – because it is needed.

And critically, all the work that Every Australian Counts did/does is alongside the efforts of many others – advocacy groups, peak bodies, expert groups, and thousands of disabled people. There was a massive army growing about “independent assessments”.

Cut to 2021, the community kept rallying – especially once it was shared that companies had been selected to go ahead with IA – even though much was still up in the air with trials, there were unanswered questions and still an inquiry to be held.

We were flooded with stories and comments from people with disability and their families who didn’t want to see these assessments introduced – whoever was paid to carry them out. More and more people kept contacting their MPs.

Every Australian Counts joined the disability sector to send out this message:

We want the NDIS to succeed. But we cannot support legislative or operational changes which we believe undermine the intent of the scheme. And may leave people with disability without the support they need.

The introduction of mandatory assessments is the biggest change to the NDIS since it began. Despite the scale and cost of the changes, they have not been rigorously tested or undergone an independent evaluation.”

With the news that a new Minister, Linda Reynolds, would be at the helm of the NDIS and with the Senate Inquiry submission date looming, #HandsOffOurNDIS was launched.

Thousands of people supported it, sent emails to the new Minister, shared their stories, said #HandsOffOurNDIS all over social media and were in no way letting their NDIS be ruined.

Plus all MPs and Senators from across the country were invited to join a briefing, to hear our communities’ concerns – and support us when the legislation hits Parliament.

“[The #NDIS] has given me the flexibility and autonomy to live my life to my full potential with choice and control” – @CydaAu Chairperson Mel Tran shared, along with her concerns about the changes.

Making headlines

Media attention was growing at this time too, keeping a close eye on the call to stop the ‘independent assessments’.

“The introduction of the independent assessments almost seems like we are going backwards instead of going forwards,” Tran was quoted.

All the while, a pilot of IA was continuing. Aaron Carpenter volunteered to take part in the pilot – see this video – ‘My NDIS ‘Independent Assessment’ was a nightmare’.

More people and organisations were calling joining the call to stop IA.

@NDS_Disability CEO David Moody said he was not confident the assessments would allow a “complete and accurate understanding of the functional abilities of people with ‘invisible’ or complex disabilities”.

A further consultation paper proposing radical new changes to NDIS funding and supports for Autistic children had Autistic people outraged.

“We are not being listened to and I have had enough.” Carl Thompson has just quit his job as an NDIS Local Area Coordinator out of anger and frustration with the National Disability Insurance Agency.

A landmark

Then, on April 24, just two weeks into her role as Minister and after receiving thousands of emails, Reynolds announces a pause on independent assessments.

‘Independent’ assessments were first scheduled to begin early this year – but were pushed back by six months to allow time for ‘consultations’. Again – thanks to people power from our community.

Next up were the Joint Standing Committee Hearings on the NDIS across April and May. More than 900 people were part of the Every Australian Counts submission. “This alone gives the Committee an indication of the strength of opposition to these reforms.” #NDISJSC

In the submission, the three most common reasons raised by people against IA were:

  1. Loss of support. People are deeply, deeply afraid that the real motivation behind the introduction of such sweeping changes is a desire to cut costs.
  2. Loss of individuality. They do not have confidence that the assessment will accurately or comprehensively capture the complexity of their lives.
  3. Loss of certainty. They do not believe their individual needs and circumstances will be accurately captured – and that therefore allocated funds are unlikely to be adequate.

The submissions and the hearings of the #NDISJSC showed a massive amount of blistering evidence put forward against Independent Assessments. Widely covered in the media, plus on social media, it heard over and over that the assessments were not wanted.

“Nobody is putting me in a box”: @dougie_herd – summing up exactly how people with disability and families are feeling about #NDIS compulsory assessments.

The depth of support across the community, including from advocacy groups, peaks, researchers, services, and many health professionals and organisations, was impressive.

Still, the Minister and Government pressed on, even though two sets of leaked documents had emerged from the NDIA revealing people’s fears about the scheme

But the community also pressed on sharing their anger.

“Like many people with disabilities and families across the country right now, I have lost all confidence in where the NDIA is taking us” – Kevin Stone. “We will not stand by and watch this happen. We will not be bullied or bought off. People with disabilities and their families will come together across the country, and we will fight you.”

Critical timing

With Minister Reynolds taking her proposals to the Disability Ministers Reform Council Meeting for approval on July 9, this would prove a pivotal time for the community to take action.

People emailed their state and territory MPs imploring them to say no to the changes and to stand with people with disability, their families and the entire disability community.

Plus key crossbenchers across the country were also contacted – warning them of what the risks would be if this legislation came into parliament – and that they could be key to stopping it.

The pressure was mounting on the Disability Ministers to share with their constituents if they would stop the proposed bill from going ahead.

As it turns out the evidence was not there, nor were the right questions being asked for the evaluation.

Even more community organisations joined the call to put an end to the assessments.

“We are calling on all governments to recommit to keeping people with disability at the centre of the NDIS” – call from: @ACOSS

As more Ministers shared the news, there was a massive sense of victory and relief from all who had fought this battle!!

We’ve shared this history, as it is important to see just how powerful the disability community is and how valued a fully functioning NDIS is.

And, these tweets are in no way an attempt to be a complete picture of the efforts made across Australia by many individuals and groups, there was so much more that happened. And it all made a difference – letters, tweets, media, phone calls, sharing stories.

More to be done

Challenges and opportunities remain ahead for the NDIS: transparency with data and research; scheme sustainability; creating a true model of co-design; a better National Disability Strategy; Tier 2 of the scheme.

But the disability community is going nowhere. We are here, strong, resilient, and absolutely ready for the work ahead. The NDIS matters more to us than anyone. On our terms.


See Croakey’s archive of stories about disability and health.

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