‘We don’t want them to have died in vain’: Families push to hasten reform

Amina Schipp began searching for support after a series of unreported falls and a fatal medication error led to the end of her mother's life in 2019. 

After sharing her story on a private Facebook group, Amina discovered that many other relatives, friends and older people living in aged care had shared similar experiences.

This drove the beginning of a grassroots campaign to increase community consultation and transparency into the government’s $17.7 billion dollar reform plan.

“What we’re hoping to achieve is to make enough noise and make sure that the aged care issues are not put on the back burner,” said Amina. 

“We've got to keep at it and keep advocating, and keep talking to our politicians and doing what we can to make our voices be heard, especially those of us that have lost loved ones.

“We don't want them to have died in vain.”

Amina's mother, Maria Oliveri Del Castillo, was 98 years old when she was wrongly administered with hydromorphone after being hospitalised due to a fall.

She died of pneumonia shortly thereafter. 

Amina said that during the year that her mother lived in residential care, she had suffered multiple unwitnessed falls, and her family's pleas for medical attention went unheard by managers and doctors.

The family is still dealing with the ongoing investigation.

“This should not happen to anyone else, and making that decision of moving Mum into aged care was very difficult,” said Amina. 

“At this point I still have no response, no concrete evidence or facts about what's being done or what's happening.

"I think it's important that people speak up and report these concerns because, behind closed doors, we just don't know what happened.”

Almost one hundred days after the government announced a “once in a generation” budget for reform, family members are calling for a clearer view into current progress. 

Amina was one of 10,574 individuals who lodged a submission to the royal commission and said she was frustrated by a lack of detailed information made available to the public.

A significant concern, she said, is the delay to establish an expert-led council of elders and an advisory council, which has yet to be formed despite recommendations for early July. 

“We’re still in the dark, we still don’t know what’s going on and I think the the public has the right to this information,” she said.

"Trying to find good answers through our politicians, local members of parliament and state senators, trying to get answers from Scott Morrison and others is like trying to get blood out of a stone.

“We want to see change. I mean, we've been through all of this, what more do we have to do to make people see and understand that change is needed?”

It was through the Aged Care Reform Now facebook group that Amina met Perth resident and group organiser Yvonne Buters.

Yvonne’s father, Henk, died of septicaemia at age 91 due to an unchecked foot injury in an aged care facility.

The process of the royal commission almost made Yvonne leave advocacy for good, but it was her fellow group members who encouraged her to continue on.

“Part of it is you feel like you’re not alone," she said.

“While it’s good that you're meeting up with people who have been through similar things and can understand it, it’s also somewhat alarming that there are so many out there."

Yvonne, a retired occupational therapist, said that people who had experienced the aged care system are being excluded from policy decisions around reform.

“I feel like a lot of work is being done behind closed doors without consultation,” she said. 

“We all bring different things to the group, we’ve all got different experiences and different backgrounds.

“I think when you have seen the pitfalls of a system, then you are in a position to advocate and say what needs to change.”

So far, the Aged Care Reform facebook group has spoken to their local members, state politicians, and federal ministers including NDIS Minister Lynda Reynolds and Christian Porter. 

They are currently awaiting a response from the government to clarify the details of the five-year reform plan, including the Council of Elders, which has yet to be answered. 

MPs speak out

Independent MP Dr Helen Haines stood in parliament last Monday to criticise the government’s “radio silence” on aged care reform.

She put forth a private members bill to demand that mandated staffing ratios be enacted immediately, particularly in regional and remote communities where worker numbers are dwindling. 

“As a nurse, and a former volunteer director of an aged care facility, I know how important it is to get reform right and without delay,” Haines told Aged Care Insite.

“While the pandemic rages, millions languish in aged care facilities in the same conditions the commissioners described.

“We need clear evidence that, irrespective of lockdowns, the royal commission reforms are tangibly progressing.”

Haines is now calling on the government to submit regular progress reports to the public. 

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