Elisa and Daphne

Elisa likes the beach and animals, and lives with her elderly mother. She has physical and cognitive disabilities and her mobility is declining.

Daphne is a support worker and has been providing support to Elisa for a long time. She told the Royal Commission she is concerned about Elisa’s situation at home.

Elisa uses mobility aids at the day centre she attends, but her mother refuses to have any aids at home. She wants to keep Elisa ‘in a constant state of motion … she doesn’t want a lifter introduced as it will mean her daughter will go all floppy,’ Daphne explained.

But Daphne believes that it’s no longer viable for Elisa to move without aids. She’s worried the home environment is unsafe for Elisa and for the support workers.

Elisa is non-verbal but can communicate. She blinks once for ‘yes’ and twice for ‘no’. These days, when Daphne asks Elisa if she wants to go for a walk she blinks twice.

Elisa’s mother refuses to accept that Elisa doesn’t want to go for a walk and says she ‘doesn’t know what’s good for her’.

‘I can no longer do this,’ Daphne says. ‘It is causing her a great deal of stress, pain and is hurting my back’. Despite this, Elisa’s mother insists they walk without a walking frame and threatens to advertise for new staff if Daphne refuses.

Daphne says that many of Elisa’s support workers have resigned because of injuries sustained while caring for Elisa and unresolved complaints to the care provider organisation.

This has created a new set of challenges for Elisa and her mother. Not only does Elisa lose staff she likes but new staff have to be interviewed, hired and trained. No documentation is kept in the home, so all history of Elisa’s care disappears when staff leave.

‘Routine and familiarity has now been replaced with a constant revolving door of staff.’

Daphne has heard the mother tell Elisa that ‘all the workers have left because of [Elisa] and she has to walk more’.

But Daphne doesn’t blame Elisa’s mother. She considers her a very knowledgeable woman who has done an extraordinary job over the years but is now exhausted and fears change.

Daphne blames the provider. ‘Failure of the provider to intervene when numerous staff raise concerns about decline in the client’ is inexcusable, she told us. It ‘has taken away the client’s right to a good life, and a SAFE life’.

Daphne would like to see the provider put Elisa’s needs above her mother’s beliefs and wishes. The provider has said ‘the client is at the centre of everything they do’, but Daphne pointed out that Elisa is the client, not her mother.

At the very least, Daphne said, there needs to be a care plan and documentation in the home to trace Elisa’s progress and history. She would like to see regular reviews by medical professionals and meetings between the provider and Elisa’s support workers.

Daphne cares about Elisa and would like her and other non-verbal clients to have an avenue for their care to be reviewed independently from ‘exhausted family members [and] unscrupulous providers’.