Supporting people to fully take part in society

The National Disability Insurance Scheme (NDIS) funds the types of things that people with disabilities need in order to carry out everyday activities, and in order to exercise their right to pursue goals such as education, work or travel. It can also support spontaneity – anyone, for example, should be free to decide whether to cook independently at home or to go out for a meal. This might require NDIS-funded modifications to an inaccessible home to allow someone to cook independently and maintain their personal safety. It might mean accessing transport like an accessible taxi or adapting a personal vehicle. No matter where somebody decides to go out, they should be able to use a public toilet (ideally a fully accessible one), and to have things funded that aren’t usually found in public toilets, such as continence wipes, colostomy bags, and support from a carer as required.

But, some people are missing out who shouldn’t be

While the intentions of the NDIS are promising, its outcomes in practice haven’t always been as expected. As one of the providers of NDIS Appeals Support, we’ve heard too many stories from NDIS participants and their loved ones about being made to jump through complex bureaucratic hoops – sometimes the wrong ones – in order to have their basic support needs met. We’re told that so many issues may not have existed had participants really been listened to during the planning stage, or if they’d had an opportunity to view a draft plan before the actual plan was created.

Certain permanent disabilities listed by the NDIS don’t require people to provide evidence of the impact of their disability in order to become participants, yet countless people’s circumstances do not fit neatly into those categories. People are being rejected as participants to the NDIS even if their health and psychosocial conditions have led to lifelong disability.

So, what can be done to ‘get it right’?

Here are 4 things an NDIS applicant or participant can do from the pre-planning stage:

  1. Request to have your planning meeting in person.
    You have the right to ask to meet in person, even if the person calling from the NDIA insists you complete a plan over the phone.
  2. Gather as much evidence about your disability as possible.
    Write down the barriers that you face on a daily basis (including weekends), and if possible, get support or assessment letters from professionals in addition to one from your GP. If communicating mental health, an occupational therapist or psychologist might demonstrate how your condition is disabling. The NDIS provides more examples on communicating psychosocial disability. Also hold onto past invoices and documents proving your eligibility for supports such as SWEP.
  3. Make sure the planner includes goals in your plan that are specific to you.
    What do you intend to do in the next year, and how do you want your life to look more broadly? Your goals are valuable landmarks to point to and say, “I need this support, or else I can’t reach that goal.”
  4. Keep track of who said what.
    Names, dates and quotes from conversations can make everyone involved accountable for ‘getting it right.’ If you prefer phone over email or writing, take notes – or ask someone to take notes – whenever you, your advocate, family, carer, support worker, and/or support coordinator communicate with the NDIA. Or if you can, talk to someone face-to-face at an NDIS office.

What if things go wrong?

It can be distressing to receive unexpected information or different advice from different people about the same issue.

Here are 4 things you might do if you’re unhappy with an NDIA decision. Remember to backup any paperwork with statements about your Lived Experience!:

  1. Complain!
    Depending on the problem, it could be most appropriate to file an NDIS complaint. If you’re unhappy with how the matter is dealt with, you can also make a complaint to the Ombudsman.
  2. Submit an NDIS form
    – If you were rejected as an NDIS participant, you can wait 3 months and apply again, but with more evidence. See #2 above. You can also apply for an Internal Review, but this may take longer than 3 months to process.
    – If critical facts are missing from your plan, such as your goals or details about your daily life (even if you mentioned them in your planning meeting), a Change of Circumstances form could set things straight.
    – If you’re unhappy with your entire plan, requesting a Plan Review on its own or within a Change of Circumstances form may help. And if it doesn’t? …
    – If the NDIA rejects your request for a Plan Review, or if certain supports in your plan are wrong, you can apply for an Internal Review (by completing a Review of a Reviewable Decision form).
  3. Keep it real!
    As a participant told me: “Sometimes legal and bureaucratic processes don’t reflect what happens in the real world.” Often they don’t. When filling the forms mentioned above, bring humanity back to the heart of the matter by illustrating what your best and worst days are like for you. Include the things that go well when you have the right supports, as well as what can go wrong when you don’t.
  4. Prove your point
    Attach letters from people who know you best to show how certain supports help you to get on with life, and to show how you are worse off without them. You could explain how access to services such as housing, education and healthcare is impacted by a lack of proper NDIS supports. The NDIA funds what they consider to be Reasonable and Necessary. Try using parts a) to f) from Section 34 of the NDIS Act to prove that the supports in question are both reasonable and necessary.

Still not right? And completely exhausted?

By this point anyone would be. Last (or first!) 4 things you can do:

  1. Find an advocate.
    If you can’t get the information or results you need, connect with a local advocacy organisation to ask for free support navigating the NDIS system.
  2. Contact an NDIS Appeals Support person.
    The Department of Social Services has funded a number of organisations across Australia to provide free support to anyone who would like to challenge a decision made by the NDIA. This could include being denied access to the NDIS and participants who are unhappy with their plans.
  3. If you have an NDIS plan, keep using it anyway!
    Until you receive a new plan, you can still use any of the relevant supports in your existing plan.
  4. Connect with others.
    Yes, the NDIS is all about independence, but you’re not meant to be alone with your frustrations. Join a discussion or read more about people’s positive experiences. Above all, remember that you have human rights, and the NDIA must uphold them.

As the rollout continues

The NDIS has the potential to contribute to social inclusion in a way unseen before in Australia. The Scheme should ensure that people with disabilities are afforded greater opportunity to choose the direction of their own unique future, and to do so with dignity.

As recent sensationalised articles have shown us, some people still need an attitudinal wake up call, while others have the right intentions but perhaps the wrong understanding. The Scheme can, in time, bring widespread awareness to the visible and invisible barriers that people are facing each day. We’re not there yet, but the more we put the NDIS system to the test, the greater chances we have of ‘getting it right.’

Kathryn Aedy

Kathryn provides NDIS Appeals Support at AMIDA. She works on Australian and UK-based universal design research and publications, is an affiliate member of Association of Consultants in Access Australia (ACAA), and an avid supporter of the Changing Places Campaign.  

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