“Left out and locked down” The experiences of people with disability and their families during COVID19 – Every Australian Counts

August 18, 2020
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“We’ve been forgotten. We need more help. We need things to be easier”. They are the overwhelming messages to come out of our Coronavirus survey for people with disability and families.

In May and June this year we asked you to tell us about your experiences during the first wave of the Coronavirus pandemic.

We asked what impact the pandemic had on your lives, how you coped and what you thought of the changes made to the NDIS during this time.

More than 700 people with disability and their families filled out the survey.

Here’s what people said

  • Lots of people said they felt forgotten and ignored by government and by the community during the pandemic – right at the time they needed help the most.
  • 32% said their costs had gone through the roof, and many were struggling to make ends meet. Almost 50% of people with disability were already living in poverty before the pandemic began.
  • Many people were stressed, anxious and stretched almost to breaking point.
  • And while changes made to the NDIS during this time helped some, others found themselves unable to get what they needed.
  • Confusing, inconsistent and changing information contributed to people feeling even more overwhelmed and unsure of where to turn or what to do.
  • For some the complicated NDIS processes and lengthy delays were exhausting and frustrating – but not life threatening. But for others continued delays threatened their very health and wellbeing.
  • Despite all of this, there was, and remains, very strong support for the NDIS amongst people with disability and their families. They fought for it, they believe in it. They desperately want it to work.
  • And they want to be partners in making that happen – they want the NDIA to talk less and listen more. They want to check changes before they are made to make sure they will work for them. And they want a simpler streamlined scheme so they can get on with their lives.

Life during the first wave

We know that life for many people with disability and their families is a juggle at the best of times. There are daily challenges, big and small, that can make life extraordinarily difficult. Add a global pandemic and life in lockdown and many of these precariously balanced lives were thrown into complete turmoil.

People with disability and their families understand this pandemic is unprecedented. No one expects government and agencies to get everything right all of the time.

Word cloud in the shape and colours of the NDIS logo. There are hundreds of single words - the bigger ones were mentioned more frequently and include "flexibility", "help", "clear" "info", etc.And lots of people mentioned how grateful they were for NDIS funding and the incredible difference it had made to their lives. Many people mentioned that some of the changes that were introduced by the NDIS at this time – like the ability to buy smart devices or buy extra hours of support coordination – were helpful.

But the responses to the survey also make clear – when some people asked for help it did not come, or it did not come quickly enough.

The kind of issues raised in the often very detailed responses were the same issues we hear about at EAC all the time. Confusing and complex processes, inconsistent and unclear information, lengthy delays, lack of flexibility and lack of help to navigate the maze are the “everyday” NDIS issues we hear about the most.

These issues are frustrating at the best of times. But throw in a global pandemic and the consequences are far more significant – and potentially life threatening.

So people’s overwhelming message to the NDIA was – “we have a lot on our plate at the moment. We know lots of it is not your responsibility and that you can’t fix everything. But what you can do is make things simple and easy at your end so we can get on with our lives.”

What people want to see change

We ran this survey during the first wave of the pandemic. But as the events of the last few months have shown this is far from over.

So what people said they wanted to see change is more relevant than ever.

People said they wanted to see:

  1. Recognition of the additional costs of disability and greater financial support
  2. Clear simple communication
  3. Extra support from the NDIS
  4. Greater flexibility in using NDIS funds
  5. Simpler, easier and quicker processes
  6. Better training for Local Area Coordinators and NDIA staff

Thank you

We want to thank every single person who took the time to fill out the survey. We know everyone was juggling a lot and so we are incredibly grateful.

We promise we will keep using the results to keep pushing for the changes we all need.


Check out the report

HTML iconRead “Left out and locked down” on our report page – HTML
PDF iconDownload the report – PDF, 914 KB, 20 pages
docx iconDownload the report – plain text docx, 56 KB, 20 pages

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