Don’t go quietly: Elly Desmarchelier on self-advocacy

Even as a professional disability advocate, Elly Desmarchelier struggles with the National Disability Insurance Scheme (NDIS). Here, she shares her advice on how to cut through and get results.

It was week six without any funding in my NDIS plan. 

Eighteen months ago, an unexpected rapid decline in my health meant I needed more supports and quickly. This led to me running out of NDIS funding before my 12 month plan was up. I thought all would be ok, because I had letters from multiple doctors explaining that the extra supports were vital and that I needed an urgent plan review. 

It seemed, however, that the NDIA had a very different definition of “urgent” to that of my doctors and I. 

Luckily, my wonderful support worker, despite being only weeks away from becoming a first-time dad, continued to show up to work despite not getting paid. 

“It’ll work itself out,” he would reassure me, as I pleaded with him to stop working because I was riddled with guilt. 

It was in week seven when I desperately needed to order more catheter bags, but couldn’t afford to place the order, that I decided advocating for an urgent plan review was going to become my new full-time job. I called my NDIA Local Area Coordinator (LAC) twice a day - once when the office opened in the morning and once 30 minutes before it closed in the afternoon.

“Your plan is with the delegate”, “Your plan is with the urgent review team”, “Your plan is with a senior LAC”.

It seemed like my plan was with anybody but me. 

At the same time, I emailed my local MP, the then-federal Minister for the NDIS, the state Minister for Disability Services - anyone with a shred of power. 

Finally, on day six of week seven, I told my LAC in our regular morning call that I was on my last catheter bag and I would have to start reusing them, which is a huge infection risk. For some reason, it was this realisation that made something finally click with the staff at the NDIA. I had a new plan in 24 hours.

Why am I telling you this story? Because it shows that even the best advocates - and I’ve been paid to advocate for a living - can struggle to advocate for themselves when it comes to the NDIS. 

All my tips and tricks, speaking ‘NDIS language’ and knowing how decisions are made didn’t get me a quick result. Being persistent, consistently voicing what you need and not going quietly until they fix your problem is simply the only way to get things done.

To do that, my advice is that you need to have one direct contact and one clear ask. For me, the direct contact was my LAC and the ask was to approve my new plan.

I am also of the view that it’s important to treat your direct contact with respect. You can be direct. You can explain how frustrated you are, but often I find it more beneficial to acknowledge they’re not the ultimate decision makers and are just passing on information. If you can build a genuine connection with the person you’re advocating to, it can drive them to work that bit harder to get your issue solved.

Additionally, I find it can be helpful to explain the consequences of not having your ask met. In my example, the risk of infection from reusing catheter bags raised the stakes of not delivering on my ask, which meant that the decision was ultimately made more quickly. 

Finally, if you’re struggling to advocate for yourself in the NDIS system - take heart in knowing you’re not alone. The NDIA is a giant, multi-billion dollar government bureaucracy and often we are fighting for our most basic needs to be met, which can be soul destroying. 

So next time you find yourself broken after another call with the NDIS, take a break - they’ll be there tomorrow - spend some time doing something you love.

For a library of resources to help you get the most out of the NDIS, check out Hireup's Navigating the NDIS platform.