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

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

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.

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.

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.

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.

The national disability insurance agency has limited its offering of rapid antigen tests to participants and providers in supported independent living, often called group homes.

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.