“I didn’t realise how long I’d been running on empty until that moment”

From initial feelings of guilt to a life-changing chance to refuel, new National Disability Insurance Scheme (NDIS) participant Jasper Peach shares their first experience of disability support.

According to what it says on the box, the NDIS exists to provide funding to eligible people with disability based on their individual needs. I didn’t really know what this meant until last week, when Julie - an NDIS support worker - was with me for six hours across two days. 

From the outside, this looked like Julie going to work and me receiving specific assistance - but there’s more to it than that.

Last week was the first time I’ve had help from someone who wasn’t obligated or doing me a favour. I’ve paid for medical appointments, of course, but this was different. This was someone helping me with regular, mooching around the house tasks. Those things you do behind closed doors, in your tracky dacks, that keep a household (and the collected lives within its walls) running.

I felt guilty at first. I realised I was talking really fast - that the air was charged with my anxiety about someone seeing what things are really like. What I have trouble with and the tasks I gloss over because they’re not possible. 

Julie is a beautiful presence – non-judgemental, calm and clever. She has a way of thinking things through and presenting options to consider. I never felt rushed, pressured or controlled. I felt like someone was standing beside me and seeing what I see, with additional capacity to offer.

We began to find our groove. I’d printed two copies of our service agreement - effectively a job contract between us - and we signed on the dotted lines while drinking cups of tea. 

Clarifying what I need help with was a strange process because so many of the tasks are things I technically can do, but with difficulty and at the cost of  doing other things. Wiping benches wipes me out and leaves me with elevated pain levels. I do it but not well, and not often.

There’s freedom in the transactional nature of our time together. The funds come from my NDIS plan, so when Julie submits her invoice, the money is coming directly from the Scheme - not my savings account. 

Paying Julie is much like the regular task of paying a bill, but the difference lies in the lack of twisting guilt in the pit of my stomach about what I’m having to give up in order to have this support. I’m not thinking about the electricity bill or groceries that this money ought to have gone to. My NDIS plan is not for those things, it’s for my disability-related needs. 

On our second day together, Julie made our cups of tea - and it was quite nice to have someone take that task off my plate. After she left for the day I had some time to rest before my children arrived home because she’d done the things that needed doing. I didn’t realise how long I’d been running on empty until that moment.

The flow-on effect of Julie’s support to my quality of life and that of my family is incredibly moving.

My kids now have a parent at home to greet them with far more energy and capacity to play than before. The balance between my partner and I feels more centred and I’m not relying on her to pick up the slack where I previously perceived myself as falling short.

I now have help to do the things that my disability precludes me from doing. It’s simple -  and epic - and will take some getting used to.