‘Up in arms’: 76-year-old home care recipient affected by new debit card rule

An Australian woman receiving at-home care has said recent regulation changes made by her provider has negatively impacted her independence.

Helen Neville, 76, lives with severe scoliosis, a debilitating condition where the spine is curved sideways, causing significant pain and reduced mobility.

She has been home-bound for nearly three decades and is dependent on support from her local aged care provider.

While Helen has had no problems over the past three years, regulations suddenly changed and she's now no longer allowed to hand over her debit card to support workers to buy her groceries.

Instead, she has to get cash out herself.

"I took this extremely personally," Helen told Aged Care Insite.

"It's really affecting my independence.

"So I said to the aged care manager, 'I won't comply'."

Helen lives in Nambour, a rural town of just over 11,000 people in the Sunshine Coast region of Queensland.

Although scoliosis has influenced her daily throughout her life, the condition 'finally caught up with her' at age 50.

For the first fifteen years, she received financial support through a disability pension.

When she reached 65, she found a local provider in 2017.

"I've had the same support girl for three years, and she's just wonderful," Helen said.

"We've started another support person this week – she's very young, but she's a bright little button.

"So, everything was fine. Even through Covid, some tough regulations were brought in and I accepted all that because the situation was pretty terrible."

But then, a new rule that prohibited Helen from handing over her debit card to her support girls came into play.

"It is a discriminatory rule," Helen said.

"I don't want to be placed in the same box as someone else who apparently had a negative experience."

Helen said she disagrees because maintenance support, including buying groceries, should be part of the package and align with consumer-directed care.

She wrote to the chief of her provider who passed the letter on to the acting manager. She was promised they'd 'investigate' the situation. 

A month later, the acting manager returned to Helen and said, 'The rules stand. And that's that'.

"I'm pretty up in arms about it," Helen said.

"We didn't even receive a letter that this was going to happen. It suddenly came by word that they can't take your card anymore.

"I took that extremely hard because I'm so independent, I've been managing my affairs for so long, and I'm a good judge of people."

Nowadays, Helen does most of her grocery shopping online.

But the day Aged Care Insite spoke with Helen, she said this week was 'case in point' because she wasn't feeling well and couldn't leave the house to get milk and bread.

"I had to call my daughter at six in the morning to get some things for her," she said.

Helen rang advocacy charity Council on the Ageing (COTA) to file a complaint, and also penned a letter to aged care minister Anika Wells, but said she has received no response.

"I feel bad about complaining, though, because it seems so trivial when there are so many other things wrong with aged care," Helen said.

"But I know other people are also unhappy with the new rule. Only they don't have the capability to do anything about it.

"So, I felt I could take it up and do something."

While Helen's mentally well, her physical health is deteriorating rapidly, she said, her scoliosis is worsening, and she recently received news that a hernia in her stomach will end up being terminal.

"I can see how each year, I get worse. And I just have to see year by year how I go," she shared.

"I'm just letting it take its course."

Still, Helen is trying to resolve the issue so that others won't have to in the future.

"Don't put me in a box with somebody else, but talk to me," she said.

"Don't treat me sort of like I'm just old.

"This should be a choice."

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