Ellie Robertson has one simple question.
The 53-year-old Sydney woman lives with spinal muscular atrophy and relies on four shifts daily from support workers to get out of bed, shower and dress, go to the bathroom and get back into bed.
But as the COVID-19 Omicron variant ravaged NSW, leaving her at one point with five of her team of seven carers either infected or self-isolating, she needed more information about her worst-case scenario.
"I rang around all these government sites and my question was 'what do I do if I get COVID? Who is going to look after me? Do I need to go hospital? Will anyone care for me?'" Ms Robertson says.
"I couldn't get any answers and it made me feel like shit, like a second-class citizen."
Ms Robertson has spent $6000 over the past two years buying enough personal protective equipment for her carers.
In January alone she has forked out $400 on rapid antigen tests because while the NDIS provides funding for those in group settings, people like her miss out.
"It was really difficult making people come in ... I'm asking them to put their lives and their families' lives at risk. But what can I do?"
And with seven different carers coming into her home each week, Ms Robertson faces a heightened risk of catching COVID-19, which could well be a death sentence given she has a compromised lung capacity.
"I've dodged so many bullets ... I'm just wondering how long I can keep doing it," she says.
Ya'el Frisch, 37, has cerebral palsy. She lives independently in Sydney's inner west but relies on support for all her daily needs.
She has been hit hard by support worker shortages - National Disability Services chief Laurie Leigh says some providers have lost up to 30 per cent of their workforce - with her team reduced from eight to three.
This means she faces a lower risk of getting infected but a higher risk of being stranded without care if her support workers get sick.
And like Ms Robertson, she's struggled to find out what PPE she would need to wear if she got COVID-19.
"Calling government lines - people didn't seem prepared for that question," Ms Frisch says.
"The level of uncertainty was unnerving - to realise people haven't worked through my situation. It's very hard to feel in control."
The staffing shortages have also rocked 40-year-old Pauline David.
On three occasions she's been left unable to shower, get dressed or leave the house when her carers had to isolate.
Another time this happened, the Diversity and Disability Alliance board member, who lives in western Sydney, was told she would be sent an experienced replacement.
But this person had only been at the agency for two weeks, having recently attained a childcare diploma.
"She was patient and willing to learn but she had no experience at all," Ms David says.
"You have to just take what you can get at the moment."
Carolyn Campbell-McLean, who also lives independently in western Sydney, has spinal muscular atrophy.
The 47-year-old has a power wheelchair and uses a ventilator every night but has had to spend $1300 on rapid antigen tests for her support staff.
"I am particularly vulnerable to COVID and I'm very scared of it," she says.
"But I don't want to be one of those COVID deaths they read out on the news and say 'oh well, she had an underlying medical condition'.
"We aren't any less valuable to society. We need proper policies in place so the NDIS will let us claim back for rapid antigen tests because it feels like we've been forgotten."
Simon Darcy, a professor at the UTS business school, says this collection of problems highlights the lack of ongoing strategic understanding of the disability community.
He has a high-level spinal cord injury and relies on a team of nine carers from two agencies but is in constant fear his "house of cards" will collapse.
"Every time the phone rings, I'm thinking 'God I hope it's not someone positive'," Prof Darcy tells AAP.
"This was all foreseeable, but again, the disability sector is at the back of the queue. We have a very precarious place in society because for whatever reason people overlook, omit or don't value us."
NDIS Minister Linda Reynolds on Monday announced that people living independently with disabilities both in group settings and in their own homes may now use their core funding to purchase RATs for themselves and their support workers.
"We know that rapid antigen tests are an important tool for ensuring that participants continue to access their disability-related supports," Ms Reynolds said in a statement.
Australian Associated Press
