NDIS General Issues Inquiry - Submission | External submission

NDIS General Issues Inquiry - Submission March 2019

Every Australian Counts thanks the Joint Standing Committee on the National Disability Insurance Scheme for the opportunity to make a submission into its ongoing inquiry into the implementation and roll out of the scheme.

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 eight years since it was established, it has amassed thousands of supporters from all over the country.

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 rolls out 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 once again 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 frustration with NDIS processes and policies. In short – the scheme is not yet working the way we all want and need it to.

We stay in touch with our community in many ways – online, on social media, in person. At the moment are holding face-to-face forums all across the country to give people with disability, their families and carers and people who work in the sector a chance to talk about what’s working, what’s not and what needs to change.

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To date we have held 22 forums across the country, in both metropolitan and regional areas. As a result we have now spoken directly to thousands of people who have come together not only to talk about their own experiences with the NDIS but also share their ideas on how to get the scheme working the way it should.

We gave evidence at the Committee’s last public hearing in Melbourne about what we heard at the forums. At this hearing the Committee made it clear that, as this would be their final report in the life of this Parliament, they wanted to hear and understand what the most pressing issues for reform were and what people thought could and should be done about them.

We have had the privilege of speaking to thousands of people across their country about their NDIS experience and their ideas for change. We wanted the committee to have the same opportunity to hear from our community. No everyone can attend a public hearing, and not everyone is able to make an individual submission.

So we opened a small page on our website asking people to contribute to this submission. In one week we received more than 900 comments and stories. That is what you will find attached in an Appendix. They are as they have been submitted to us – the only editing has been for typographical errors or information that clearly, and potentially dangerously, identifies a person or their family.

Last time we made a submission to you we made the decision to edit out some of the swearing. Not all, but some that we thought people may have found offensive. This time however we have left it all in. This may give the committee some idea of the level of frustration, anger and stress experienced by many participants and their families.

The stories you will read in the following pages mirror those that are raised at all of our Make it Work forums.

Submission - March 2019

So what are the issues that are most commonly raised?

The system is too complex, too complicated, too bureaucratic, too difficult to navigate – for people with disability, their families and providers. There are too many steps for everything – as a result the system is too difficult to navigate and there are too many failure points.
Processes break down too easily and quickly - leading to issues such as gaps in plans, late payments, and lengthy waiting times for assistive technology. And there is no triage process – for entry, for support, or in emergencies.
The IT, the portal and the call centre are not working for anyone.
Communication is unclear, inconsistent and full of bureaucratic jargon that no one understands.
Staff lack basic skills, are not experienced in different kinds of disability and lack resources to call on when they need help.
As a result plans are very hit and miss - too inconsistent and too inflexible. People are not getting the supports they need, and professional or specialist reports are being ignored.
Annual reviews are too frequent, too stressful and often unnecessary.
Reviews of decisions are taking too long - leaving people with the difficult choice of making do with what they have or spending as needed and then running out of funds.
There is a perception that the scheme is under financial stress and plans are being cut across the board without reference to people’s needs.
The way the NDIS works with other systems needs to be completely overhauled. All systems but particularly health and aged care. Who is responsible for what

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and who pays for it still hasn’t been worked out. People are missing out on vital support while governments argue about responsibility.

There must be support for people who are not eligible for the NDIS - the NDIS was never meant to work isolation. Other programs and services must be available so people can get the help they need.
Even when people get appropriate funding in their plan, they are finding it difficult to find the supports and services that work for them. There are problems with both geographic areas and with particular population groups.
Transport, transport, transport – there is not much point in having funding for services, therapies or activities if you can’t get where you need to go.
People are increasingly worried the vision of the scheme is being compromised by poor implementation and as a result will not achieve the transformational change everyone fought for.

So what do people want to see change?

Simpler, quicker, easier processes. Less steps at each stage means fewer failure points and fewer delays.
Draft plans should be reviewed by participants and their families before being submitted for approval.
Clear simple communications in plain language that everyone can understand. Clear and timely communications when things change and what it will mean for participants and providers.
Better and more comprehensive staff training.
Clear all the backlogs – access decisions, plan approvals, plan reviews and approvals of Assistive Technology and home modifications. People are waiting

Submission - March 2019

too long with often dire consequences.

Better triage processes so people who need help get it when they need it.
No more call centre – people want to speak to real people in local offices who can answer their question or resolve their issue.
Support coordination for all participants - for at least the first plan.
Longer plans when things are stable but always the chance to come back when circumstances change.
Set timeframes for reviews and tracking so people know when they can expect an outcome.
More help at each stage of the process – before participants enter, during planning and then getting the plan off the page and into action.
More flexibility in using funding in ways that work for people – particularly being able to move funds between core and capacity building.
More funding for transport and more flexibility in using the allocated funds.
Simpler and faster approval processes for Assistive Technology.
Transparency in decision making – including written explanations for decisions particularly at review.
Resolution of interface issues particularly with health.
Development of completely different models in regional and remote areas – not just tinkering at the edges.
More attention and resourcing to particular groups who are missing out – people with complex needs, people without families or advocacy services,

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people from Aboriginal or Torres Strait Islander background, people from Culturally or Linguistically Diverse backgrounds.

More support for families and carers.
More attention to market development – particularly in regional and remote areas.
Revival and refunding of programs and services closed to assist people who are not eligible for the scheme.
More funding for Information, Linkages and Capacity Building.
More funding for advocacy.

Again, we would like to thank the committee for the opportunity to have input into the inquiry. And we would also like to thank the committee for all their work over the past few years in consulting with people with disability, their families and carers and people who work in the sector and making sure their experiences and views were represented in the committee’s reports and recommendations.

We therefore want to finish by strongly urging you to carefully consider the views expressed here and the suggestions for change. In our view, it is people with disability their families and carers and people who work in the sector who have the best understanding of what needs to change, and what will and what will not work on the ground. Please listen to what they have to say – they are the ones who matter most.

Yours Sincerely

Kirsten Deane on behalf of Every Australian Counts

Submission - March 2019