Omicron wreaks havoc on vulnerable people in NSW

Ellie Robertson has a simple question.

The 53-year-old Sydney woman lives with spinal muscular atrophy and relies on four daily shifts of support workers to get out of bed, shower and dress, go to the toilet and get back into bed.

But as the COVID-19 Omicron variant ravaged NSW, at one point leaving her with five of her team of seven caregivers infected or self-isolating, she needed more information on her worst-case scenario.

“I surveyed all these government sites and my question was ‘what should I do if I get COVID? Who will take care of me? Should I go to the hospital? Will someone take care of me?

“I couldn’t get any answers and it made me feel like crap, like a second class citizen.”

Ms Robertson has spent $6,000 over the past two years to buy enough personal protective equipment for her caregivers.

In January alone, she paid $400 for rapid antigen tests because while the NDIS is funding people in groups, people like her are running out.

“It was really difficult to get people to come…I’m asking them to put their lives and those of their families in danger. But what can I do?”

And with seven different caregivers coming to her house each week, Ms Robertson faces an increased risk of catching COVID-19, which could well be a death sentence given she has compromised lung capacity.

“I’ve dodged so many bullets…I just wonder how long I can keep doing it,” she says.

Ya’el Frisch, 37, has cerebral palsy. She lives independently in Sydney’s mid-west, but is dependent on assistance for all her day-to-day needs.

She has been hit hard by a shortage of support workers – National Disability Services chief Laurie Leigh said some providers have lost up to 30 per cent of their workforce – her team having shrunk from eight to three .

That means she’s at 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 struggled to figure out what PPE she would need to wear if she had COVID-19.

“Call the government lines – people seemed unprepared for this question,” Ms Frisch said.

“The level of uncertainty was unnerving – to realize that people haven’t worked on my situation. It’s very hard to feel in control.”

The lack of staff has also shaken Pauline David, 40.

On three occasions she was unable to shower, dress or leave the house when her caregivers had to self-isolate.

Another time this happened, the Diversity and Disability Alliance board member who lives in western Sydney, was told she would be sent by an experienced replacement.

But this person had only been with the agency for two weeks, having recently graduated with a degree in child care.

“She was patient and eager to learn, but she had no experience at all,” says Ms David.

“You just have to take what you can get right now.”

Carolyn Campbell-McLean, who also lives independently in western Sydney, suffers from spinal muscular atrophy.

The 47-year-old has an electric wheelchair and uses a ventilator every night, but had to spend $1,300 on rapid antigen tests for her support staff.

“I’m particularly vulnerable to COVID and very scared of it,” she says.

“But I don’t want to be one of those COVID deaths that they read on the news and say ‘well, she had an underlying medical condition.’

“We are no less valuable to society. We need proper policies in place for the NDIS to allow us to claim rapid antigen testing because we feel like we have been overlooked.”

Simon Darcy, a professor at UTS business school, says this set of issues highlights the lack of ongoing strategic understanding in the disability community.

He suffers from a high-profile spinal cord injury and relies on a team of nine caregivers from two different agencies, but he constantly fears his “house of cards” is collapsing.

“Every time the phone rings I think ‘God, I hope that’s not someone positive,'” Professor Darcy told AAP.

“It was all to be expected, but again the disability sector is at the back of the queue. We have a very precarious place in society because for some reason people neglect us, omit us or don’t appreciate us. “

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