This was the opinion of Gwenda Darling as she took to the stand on day three of the Royal Commission into Aged Care and Quality Safety Brisbane hearings to recall her own home care journey, which included changing five providers over a two year period.
The 66-year-old Aboriginal woman from Finley, New South Wales who lives with Behavioural Variant Frontal-Temporal Dementia and Temporal Lobe Epilepsy told stories of racist carers, incorrect funding statements, undelivered services she was charged for and workers with no qualifications while waiting for a Level 4 home care package since January 2017.
Requiring assistance for personal care, housekeeping, meal preparation, cleaning and transport to medical appointments, Ms Darling says although she brought up the issues she had with her provider, the Aged Care Advocacy Program and the Aged Care Complaints Commission (ACCC), no one seemed to listen or care.
Placing her first call to the ACCC after speaking to both the provider and the care worker responsible for calling her an offensive name, Ms Darling says she was told to take it up with her provider.
“In the interaction with the woman at the ACCC I didn’t feel like there was any compassion for me or concern about my experience.
“I felt like the woman I spoke to had a script to read off and there was no personalisation.”
When her third provider provided incorrect statements, leaving Ms Darling confused on how much funding she had used and available within her package, she decided to contact the ACC again via telephone.
“The man I spoke to said he would have to speak to someone else about the issue and he would get back to me,” she says.
It took the ACCC three weeks to get back and within that time Ms Darling and her family had contacted the provider.
“By the time I heard back from the ACCC I had received a financial statement a day before from the provider.
“The man from the ACCC who called back apologised for the delay and said he hadn’t been able to contact the provider.”
She believes it’s hard to know where to go to raise issues and complaints about your home care support.
“I feel like no one cares about the waste of funds and out of guidelines misappropriation that I’ve seen in home care because there’s no one to raise those issues with.
“Where do you complain about fees and charges? It seems to me that you take care of yourself.
“I feel very strongly that there should be a fraud reporting and complaints process similar to the Centrelink Fraud telephone and online service.
“I’ve been a bit fearful that I would lose my package if I complain,” she says.
Ms Darling says when her provider terminated her package in February 2017 after she notified them she was intending to change, she had to fight hard to get her package reinstated.
“I felt hopeless and disempowered after that experience and it felt like there was no point raising issues or complaining.”
Ms Darling says although she is reluctant to raise issues with the Aged Care Quality and Safety Commission again, one solution would be to send out a random survey to people receiving home care.
“What is the point if the ACCC just tell you to go back to the provider when the problem is that the provider is doing nothing?”
“I am still waiting to receive my Level 4 package, it’s 930 days.”
“I think the home care system is broken and seems totally unregulated.”
“It’s important that we get it right for the people who are vulnerable and cannot look after themselves.”
“I felt that they were just pushing to resolve the issue”
Sarah Jane Holland-Batt then took to the stand to share the experience of her father who was admitted to a residential aged care facility in June 2015 following a diagnosis of Parkinson’s disease 15 years earlier.
She told of concerns finding her dad in a dishevelled unclean state, unexplained and untreated injuries and infections, inadequate staff levels and issues with counteracting medications.
But when a nurse in the facility contacted Ms Holland-Batt’s mother about a carer victimising and abusing her father, grave concerns began for his welfare.
According to Ms Holland-Batt the whistleblower had seen a carer deliberately leave her father in distress in unclean incontinence pads for long periods, verbally abuse him and leave him immobile in a closed room while telling staff he was asleep, when he in fact needed toileting and showering.
“The whistleblower also mentioned to my mother that the reason that she told us and not the facility was that, if she told the facility, it would get swept under the carpet and absolutely nothing would be done,” she says.
When Ms Holland-Batt and her mother left a meeting with the facility with no answers, they looked into lodging a formal complaint with the ACCC.
“The complaints officer relayed to me that the ACCC was unable to pursue individuals and was really only able to work with the facility around what the facility could do, rather than this person, which was slightly alarming to me, because my concerns were about this person in particular, along with general concerns about the facility,” she explains.
Ms Holland-Batt says during the course of her conversation with the ACCC they detailed three areas of concern which could be actioned; the carer failing to refer an infection in her dad’s elbow to clinical care, inability to identity and action abuse and the fact only one carer was showering him when his care plan highlighted two people are required.
“She said these three issues would be put to the facility and that the facility would have a week or some time to respond to those issues to the ACCC and that the ACCC would then call me and discuss the response.”
Ms Holland-Batt says she was told the ACCC couldn’t do anything in relation to the particular staff member, which she found “quite alarming.”
“I was really disappointed, to be honest, by the sense that I felt that they were just pushing to resolve the issue and I was also concerned that there didn’t seem to be any robust investigation or any kind of oversight.
“I did not feel as though the regulator, (a) was on my side and, (b) had any powers, was my impression.”
She says some advice, information and transparency to those making complaints to the ACCC would be beneficial.
“It would have been really helpful, as someone who was new to this process, to perhaps have someone, a disinterested party, helping me navigate it or giving me advice or information because my feeling was that the complaints officer was kind of taking the facility at their word and so I didn’t really have anyone to help me push back against that.”