Evelyn's story – NDIA tells me to withdraw my son’s AAT appeal if I want interim supports

Read our legal information about COVID-19 coronavirus.

Evelyn's story – NDIA tells me to withdraw my son’s AAT appeal if I want interim supports

I want the best for Lenny and without urgent supports, we’re finding it really hard to cope.

Read about Evelyn's experience during COVID-19.

The world is a confusing place for my son Lenny when plans change. I am his rock and guide. COVID-19 has been so hard for us. To be honest, most days I haven’t been coping.  

Lenny is seven and tall for his age. He loves playing with our two cats. He has been diagnosed with Autism and sensory processing disorder, as well as ADHD, oppositional defiant disorder, auditory processing disorder and anxiety. Lenny also has learning difficulties and needs constant support with home schooling and online therapy. 

Being at home through COVID-19 has been hard. When COVID-19 hit, I realised I needed a wide angled web-cam in order for online therapy to work, but even though we have money in Lenny’s NDIS plan, the NDIS initially were chopping and changing about whether you can spend money on a device. First it’s ‘yes you can buy a device’, then they’ve put things on their website saying ‘yes you can buy a device’ and then they’ve removed it. I also realised we needed some additional low-cost assistive technology items to do remote therapy and a support worker to help me manage my carer role and attend important medical appointments because Lenny is now home 24/7. Funding for a support worker and low-cost assistive technology are already in Lenny’s plan but we need them more intensively during COVID-19. The NDIA didn’t think these are COVID-19 specific supports. 

When I asked for urgent supports in April, the NDIA told me that I will need to withdraw Lenny’s Tribunal appeal to get them in his plan. This was scary and stressful. During the first lock down, I called one of the parent helplines because we weren’t coping, and I was told my options are to either deal with it or call DHS. Since then, I’ve tried really hard to get help from the NDIS. I’ve had many conversations with different people at the NDIA to ask for these supports. I got told different things and kept being passed around. Sometimes, I just never heard back from the NDIA.

No one could give me a clear response. It feels like no one wants to talk about our urgent support needs. The overwhelming message was that there was nothing the NDIA could do because of the Tribunal appeal.   

Stage 4 lockdown has been so hard for us. I feel like we’re trapped at home without any support. Lenny isn’t coping. He’s behind in school, isn’t cooperating with online therapy and has a really hard time when we need to leave the house to get essentials. I feel like I’m on a roller coaster. I’m Lenny’s full-time carer and I’ve also had to be his teacher’s aide and therapy assistant. Some days it’s ok, but most days I’m drowning in tasks. We’ve also had to deal with issues with Centrelink and issues with my landlord including falling behind in rent and a threat to evict us. I feel in the dark and out of control of everything. My GP recently prescribed me medication to help me manage my anxiety during COVID-19. I want the best for Lenny and without urgent supports, we’re finding it really hard to cope.  

I understand that currently the NDIA and VLA are trying to work out a way for the NDIA to change Lenny’s plan without it affecting the jurisdiction of the AAT. I’ve also provided support letters about why we need the urgent supports. I asked for the supports back in April 2020 and its now August and Lenny is still waiting. 

How we can help

Call us for free information how we can help you to get support with the National Disability Insurance Scheme:

If we can’t help, we can refer you to other organisations that can.

Was this helpful?