Changes to the NDIS Act & Rules Submission November 2021
“Timeframe is much too short to allow promised meaningful consultation with disability community.”
EAC Submission to Community Affairs, Nov 2021 - Summary
We want to begin by thanking the Senate Community Affairs Legislation Committee for the opportunity to contribute to this critical inquiry. The changes proposed in the National Disability Insurance Scheme Amendment (Participant Service Guarantee and Other Measures) Bill 2021 are a far cry from the changes we were anticipating this time last year, when the former Minister for the NDIS was planning to legislate independent assessments, and make changes to Reasonable and Necessary. Our community is relieved and grateful that they have been listened to - and those changes have not been included here. And they are grateful to see some of the welcome recommendations from the Tune Review being introduced - although some very important nuance and detail has been lost in some cases.
However, our community is still feeling battered and bruised from the experiences of the last 18 months - in addition to the stresses of the pandemic. They are disappointed about the extremely short consultation timeframes. As a result, persons in our community continue to feel cautious and skeptical about many of the proposed changes.
But before we get into the detail, let us tell you a bit about who we are…
Every Australian Counts is the grassroots campaign that fought for the introduction of the NDIS. It is a community of people with disability, their families and carers, people who work in the sector, as well as ordinary Australians who want to see a better and fairer deal for people with disability in this country. In the ten years since EAC was established, it has amassed thousands of supporters from all over the country.
Unlike other campaigns, Every Australian Counts didn’t end with the introduction of the NDIS in 2013. The EAC community has stayed active and engaged as the scheme has rolled out all around the country. Our community continues to fight to make sure the NDIS stays true to its original vision, and delivers on its promise to people with disability.
We want to begin by acknowledging our support for the NDIS. We have had the opportunity to both see and hear firsthand the incredible difference it has made to many lives. When it works well, it does change lives for the better – as we always hoped it would.
But our community is also all too aware that it is not working well for everyone. Too many people are falling through the gaps, and not getting the support they need. Even those who are ultimately happy with the outcome express constant frustration with NDIS processes and policies. In short – the scheme is not yet working the way we all want and need it to.
We have had the privilege of speaking to thousands of people across the country about their NDIS experiences. Whether face-to-face or online at one of our community forums, or through social media, phone calls and emails, or through surveys and submissions, we are constantly collecting people’s experiences, feedback and ideas for change. We do this because we are concerned that in the maelstrom that has become the NDIS, the voice of people with disability and their families – the people who use and need the NDIS the most – is often lost. We want to make sure they are front and centre, as they should be.
No changes to the NDIS should ever be made without first consulting the people who matter most. It is their experiences and priorities which should drive change.
We therefore wanted the Committee to have the opportunity to hear from people in our community who may not have otherwise engaged. Not everyone has the time or resources to make an individual submission directly to the Committee – and many feel intimidated by the formality of the process, and cautious about repercussions for expressing criticisms. Others expressed frustration that their previous submissions to the Department of Social Services (DSS), the Tune Review and other previous inquiries would not be considered here even though their concerns remain unchanged.
During the DSS consultation we opened a small page on our website asking people to make submissions that we would collate and pass along on their behalf in our submission. We left that form open in case this Senate inquiry was announced so that people could more easily contribute to both.
When we used a similar process to collect stories for the Tune Review in 2019, we received more than 600 individual submissions in just a few short weeks. But this time we received little more than 100 in total for our submission to the Department of Social Services and this inquiry combined. Members of our community have overwhelmingly responded to the news of these consultations with a mixture of heavy disappointment and cynicism about the very short consultation timeframes. They told us the amount of information to consider was far too much, far too complex, and far too time-intensive to read, understand, or respond to. This was generalised by the stress, exhaustion and anxiety about opening up at a time when people with disability are at terrible risk of COVID-19. Community transition is high and vaccine rates of pepole with disability are low - while states open back up. This was generalised even more by the short passage of time since the long and traumatic fight against NDIS independent assessments – a process that left our community feeling exhausted, anxious, and very distrustful of the Federal Government and National Disability Insurance Agency’s intentions for the NDIS both now and into the future.
You will find the stories, statements and ideas about people’s experiences with the NDIS legislation, the ways it could be improved, as well as specific feedback on the proposed changes attached in the Appendix. They are as they have been submitted to us – swear words and all. The only editing has been for typographical errors or information that clearly, and potentially dangerously, identifies a person, their family, the person they support, or their employer.
So the focus for this submission is on the voices of people with disability, their families, and the people who support them.
We have left the substantive legal analysis to our colleagues from PIAC who have provided recommendations endorsed by members of our community as you will see in the Appendix.
As you read through the statements people have shared, you will see key themes emerging that are consistent with what we have heard again and again from people over the years - that they want a fair, easy to use scheme that is flexible and that puts them in the driver’s seat.
And they want the Federal Government and the NDIA to treat them with respect, and genuinely listen.
But what was the most common concern people shared with us about the Bill? The changes to Section 47A and 48 - the power to allow the CEO or delegate to change an NDIS plan.
Why? Because it has not been presented as recommended in the Tune Review. The Tune Review recommended that the CEO could make small changes to people’s plans – but only in very limited circumstances.
Those limited circumstances should be in this Bill, but they are not. The Federal Government plans to release them AFTER the Bill passes.
The submission from Joe below sums up the sentiment from the ground. He said the proposed Section 47A change is “particularly dangerous as it could depend on the CEO, their integrity, and the needs and wants of the Government of the time!”
People with disability, families, and the people who support them have had very little time to learn about all of the complex legislation changes being proposed. And despite polite requests from EAC and many other groups and individuals for more time, Minister Reynolds has refused - making it clear the Federal Government would like the Bill to get through Parliament before the end of the year, without any big changes. Before the Rules are made public.
While we know your team will read every single one of the stories in the following pages, what follows is a very brief summary of their valuable insights, concerns and suggestions for a better way forward.
But in short - these are some of the most common types of responses we received:
- The consultation timeframe was much too short. And the information was much too complex. People assume this was by design. It has further eroded trust.
- The CEO has way too much discretionary power, especially when it comes to changing people’s plans. The limited circumstances must be consulted on first.
- Plain and clear and reasons should always be provided for decisions, by default.
- Self and plan managed participants are very worried about loosing choice and control.
- The word ‘reassessments’ is too closely associated with independent assessments - but giving clarity to the different forms of ‘reviews’ is welcome.
- Participants must be able to request their own reassessments, not just the CEO.
- Undefined terms need clarity. People want to know what “appropriate treatment”, “unreasonable risk” and “substantial improvements” mean exactly.
- People want more individual advocacy to help them navigate the NDIS.
- People don’t want to do S100 and AAT appeals, they are far too slow and distressing.
- Plain, clear language is needed for the NDIS Act, Rules, policies and communications.
- People want to see a draft of their plan before it is approved, by default. And have the opportunity to correct mistakes.
- People want genuine, meaningful engagement. They want to be heard and respected. Trust has been broken and will take much time and effort to regain.
People with disability and their families feel a strong sense of ownership of the scheme – they fought hard for it. They built the political and public support for it from the ground up. They want to be partners in its delivery. But they feel sidelined by government priorities that do not align with their own.
They want that to change. This inquiry offers a crucial opportunity to turn that around. We sincerely hope it does.
We are counting on it.
Yours Sincerely Every Australian Counts
“I underwent "appropriate" treatment” for my Dystonia and suffered a stroke as a result, leaving me significantly more disabled. I wouldn’t have pursued that treatment if I had access to appropriate support at the time.
I would hate for someone else to be pushed into pursuing a risky treatment in order to receive necessary NDIS funding.“
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