Darlene

Darlene is in her 60s and had polio as a child. She uses a wheelchair and lives in a rural area.

‘You know when you look at it on the map it’s really not remote,’ Darlene told the Royal Commission over the phone. ‘I don’t know if you can hear the birds singing, but the birds are singing right this minute … I love it here. And that’s all I want to do, I just want to stay in my own home and I want to have safety and functional independence and my own choice of daily routine.’

Darlene joined the NDIS when it was rolled out in her area several years ago.

‘Part of what the planner wrote up in my NDIS plan [is] a whole section on home safety and modification … so we’re going to widen the bathroom, we can knock down a wall … and just make it big enough for a wheelchair.’

Darlene can walk and stand for short periods, but needs handrails in her shower and on the front porch to stop her falling. She said occupation therapists (OTs) ‘recoil in horror’ when they see her bathroom. They want it to be modified for her wheelchair.

‘So the trouble is this. When [the local] NDIA decision maker said no, she said no to everything … The quotes weren’t detailed enough or something, but she never said why … She just said, “No, you can’t have it,” and therefore that meant all of those home modifications including handrails, absolutely everything, was knocked on the head.’

Darlene said that even though the money’s in her plan, she still can’t get a handrail.

‘I asked for a handrail out in the front porch, which is pretty basic. It’s just a metal rail, you know, it’s not expensive.’

Darlene’s since fallen twice and ended up in hospital. 

‘I knocked myself unconscious and I woke up in the dirt with gravel rash all down one side of my body and a massive big lump on my forehead that just come out in like an egg.’

She’s now frightened to go onto the porch to water her plants.

‘I’ve got thin bones to start with and any kind of fracture takes a long time for me. So at the moment I’m having nightmares now. I live in fear of falling again.’

To access her house Darlene uses a ramp that’s not designed for a wheelchair.

‘It sort of bows in the middle so you’ve got to take a bit of a run at going down and it’s pretty steep.’

Because she can’t safely use her shower, Darlene sits on the toilet and leans over a bucket to wash her hair.

‘Sometimes it’s months before I can wash my hair. It’s just horrible.’

She said every time the NDIA rejects her submission and asks for more details, she struggles to get builders and OTs back out from town. 

‘Why would you bother coming out of town when you’ve got as much work as you could never finish in [town] … So it’s not that there’s no OTs or builders or anyone, it’s just you’ve got to get yourself slotted in.’

Darlene’s now making a new submission because the NDIA never acknowledged her last submission and the quotes expired.

‘I said [to the last planner] … “That’s insane. You mean you can’t just use the previous one?” … You want to tear your hair out, you know?’

Darlene can’t understand why, if her NDIS plan is ‘about safety’ and has money for modifications to stop her falling, the NDIA still refuses after all these years to approve the work.

‘If I stay in my own home it’s going to save the government hundreds of thousands of dollars. If I end up fracturing that hip before I can get the hip replacement it’s going to cost hundreds of thousands of dollars, you know, in the system. Surely it would be better to keep [me in my] own home.’