Woman living with muscular dystrophy forced to spend $1,300 on rapid antigen tests for in-home carers

It’s not easy to quantify the cost of the Omicron wave to Carolyn Campbell-McLean, but here’s a good starting point: $1,300.

That is how much she says she has spent on rapid antigen tests since Australia’s PCR testing system began to falter.

There have been other costs too: Campbell-McLean paid the price for the December PCR testing debacle when she couldn’t find a Covid-negative carer to help her get into bed on New Year’s Eve; and she has not left the home she shares with her husband, who also has a physical disability, since 15 December due to the spike in cases.

But the cost to Campbell-McLean just to keep herself safe is perhaps neatly summed up in that figure of $1,300.

“I’ve spent $1,300 of my own money on Rat tests so I can make sure my carers do them before they come in,” Campbell-McLean said. “The NDIS has not allowed me to claim that money. If I was living in a group home, the staff at the group home and their agencies that runs those homes are … able to claim this money.

“People who support ourselves in our own home … are not able to claim that. I think that’s really unfair.”

Campbell-McLean, 47, lives in western Sydney with spinal muscular atrophy, a form of muscular dystrophy, and sleeps with a Bipap machine, which is a type of ventilator. She cannot blow her nose by herself, nor cough.

Last month, when Scott Morrison pushed back against calls for universal rapid antigen tests because Australia was at “another stage of this pandemic … where we can’t just go round and make everything free”, it’s unclear whether he meant people like Campbell-McLean were expected to spend hundreds of dollars on the tests.

But, according to Campbell-McLean, the current policy settings means that is her reality.

Campbell-McLean said she needed the tests to safely allow her support workers into her home. And without those workers, she cannot get out of bed in the morning, get dressed, have a shower or go to the toilet.

The prime minister has also differentiated between aged care and health settings, where free tests are available, and so-called “casual” uses of rapid antigen tests, which he’s argued are “what the private market is for”.

Where people with disability like Campbell-McLean are supposed to fit into that picture is unclear, though a department spokesperson indicated increased access to rapid antigen tests for the disability sector was being worked on.

Campbell-McLean is not alone. Guardian Australia is aware of another family who has already spent about $1,000 on rapid tests to provide to staff caring for a man with motor-neurone disease.

“I’ve taken what I think is personal responsibility,” Campbell-McLean said. “I’ve stopped going out to things, and not putting myself at risk. But I can’t survive without support workers coming in and helping me go to the toilet.

“Everyday they report numbers and they say, ‘That person had an underlying medical condition.’ That doesn’t make it OK that they died.”

Campbell-McLean’s team of seven support workers take a rapid tests before most, though not all, shifts. She will normally have three to four care visits a day from different workers.

Campbell-McLean noted she was lucky to have obtained as many rapid tests as she did, and that she had the savings to buy them.

Some she bought online, though they haven’t all arrived, while a local chemist also provided what Campbell-McLean called “his personal supply”. She said she expected this supply to be used up by the end of the month.

Before PCR testing was overwhelmed, Campbell-McLean’s support workers underwent those tests regularly, but the long wait times – both to get tested and to receive the results – have made this unworkable.

April Purdon, 19, is one of Campbell-McLean’s support workers and considers her a friend. “It’s been hard, we’ve gotten very close over the time,” Purdon said of the past two years.

Ideally, Purdon said, rapid tests would easily accessible, or even free, so the support workers wouldn’t have to ration them.

“I’d take one before every shift, so I wouldn’t have to worry about the stress or the guilt,” Purdon said. “[Campbell-McLean and her husband] are worried about it, and that makes me worried … That’s the thing, home support: you’re really bringing it into their home, their safe place.”

The chief executive of Muscular Dystrophy NSW, Charlotte Sangster, who employs Campbell-McLean, warned people with muscular dystrophy had a restricted lung capacity and were “particularly vulnerable” to a “really poor outcome” if they caught Covid.

Campbell-McLean summed up the situation this way: “[The doctors have] said don’t get it. My lungs are a third the capacity of an average person.

“That’s why I am on a ventilator at night. I can’t independently blow my nose, I need assistance to cough. I don’t want to get the virus, I don’t feel I would do well with it.”

Advocates argued Campbell-McLean’s situation was emblematic of frustrations within the disability community that too often it had been forgotten in the pandemic response.

Campbell-McLean is among the estimated 18% of NDIS participants excluded from the government’s scheme to provide 10 free rapid tests over three months. That’s because she does not hold an eligible concession card.

“There is a subset of people here that don’t necessarily fit the pension group, who need to have enough rapid antigen tests to keep themselves alive and healthy and don’t necessarily have the funds to do it,” said Serena Ovens, the chief executive of the Physical Disability Council of NSW, who described the situation as “mind-boggling”. “I think the government needs to stump up.”

Of the 480,000 NDIS participants in the scheme, about 25,000 participants are able to claim the costs of those tests. Meanwhile, the peak body for disability providers has had its calls to gain access to the national stockpile of rapid tests, as occurs in aged care, rebuffed.

The opposition NDIS spokesperson, Bill Shorten, said rapid tests should be free. He described Carolyn’s story as “heartbreaking”.

A department of social services spokesperson said the department was “working with the department of health to support access to rapid antigen tests for the disability sector, as the supply increases”.

A spokesperson for the NDIS minister, Linda Reynolds, pointed to recent announcements in NSW and Victoria to “supply rapid antigen tests to disability settings”.

The Victorian government announcement referred broadly to “essential workers” in disability services, but the NSW statement referred only to those in supported independent living, which is separate to Campbell-McLean’s situation.

The spokesperson added there were free PCR tests in state and territory clinics “with significant reductions in testing times across all jurisdictions”.

An NDIA spokesperson said the agency continued to “review measures relating to Covid-19 on an ongoing basis to determine what changes are needed to safely deliver supports and services”, in accordance with “advice from the Australian Health Protection Principal Committee”.

Article published by The Guardian in January 2022. View the online article here.