Key Points
- The government's long-promised new Aged Care Act is expected to be introduced after 1 July.
- Advocates say the Act must provide more support for older Australians with disabilities.
- People like Gloria, who are diagnosed after 65, are not eligible for the NDIS under the current system.
As a former foster parent, nursing assistant and mother of four, Gloria has been caring for people her whole life.
But she now relies on others for even the most basic tasks, and is not eligible for the care and support she needs through government systems.
She's hoping the government's long-promised new Aged Care Act will change that.
Gloria has a condition called spinal meningioma, leaving her with paraplegia, spasticity and chronic incontinence.
"I want to walk so much, and I was told I probably will in time, but it is not true. It's not true at all," she said.
"Some people think I don't have a mind if I'm sitting in a chair that's got wheels, but I have."
She was diagnosed at 69, meaning she is ineligible for the National Disability Insurance Scheme, which is open to those diagnosed before the age of 65.
That leaves her, along with many others, reliant on a Home Care Package under the federal government's My Aged Care scheme.
Unlike the NDIS, these packages are capped at just under $60,000 a year, meaning less funded support for Gloria's condition.
Gloria's children Sarah and David have had to take on the bulk of their mother's care. Source: SBS News / Chris Tan
Sarah said they took on the role four years ago after moving Gloria out of a nursing home, due to concerns for her health.
She said taking on her mother's care was draining and physically demanding.
"It involves a lot of bed positioning. It involves a lot of changes, a lot of rolling and turning a lot of heavy work, heavy lifting, moving. It involves heaps," she said.
"It really drains you; it takes everything."
Gloria's Home Care Package funds incontinence aids, some medical supplies, and an hour or two a day of care from a support worker or nurse.
But Sarah said the family cannot afford the care that would improve Gloria's quality of life, including a ceiling hoist to help her move around the house and an occupational therapist.
"Sometimes I think that I just can't wait till she dies so she could be at peace and she wouldn't be suffering ... it makes me feel so sad to even think that because it's disgraceful," Sarah said.
"But we just take one day at a time, just got to remain positive."
Gloria requires support for everyday activities including showering and using the toilet. Source: SBS News / Chris Tan
New Aged Care Act to be introduced
The government's new Aged Care Act is expected to be introduced into parliament after 1 July.
It comes in response to the Royal Commission into the aged care sector, with the final report handed down three years ago.
The Royal Commission heard countless experiences of substandard care and made 148 recommendations for sector reform.
Ross Joyce, CEO of the Australian Federation of Disability Organisations, said the new Act needs to ensure all older Australians have access to adequate support.
"Those supports need to be put into place, and as per the Royal Commission, they need to be akin to what those people could get if they were on the NDIS," he said.
"Why should older people with disability be missing out on the relevant supports that they need when they've done all of their contribution to community and to society, and they get to this point - and they just seem to be forgotten."
A draft of the new Aged Care Act was released in 2023, but Joyce said he was concerned older people would continue to miss out.
"The New Aged Care Act delivers zero for older people with disability," he said.
"We want to see that there is a recognition of older people, as part of the New Age Care Act as well, because at the moment, again, they're missing an action."
A spokesperson from the Department of Health and Aged Care told SBS the new Aged Care Act "recognises the unique needs of people with disabilities in The Statement of Principles, and includes a specific reference to individuals with disability, mental ill health and neurodiversity".
The spokesperson said those requiring more support may find it "beneficial to consider ... options including residential care".
Sarah said she would not return Gloria to a nursing home, and would continue to care for her as well as she could.
"My mum's so beautiful ... she wouldn't wish this on anyone," Sarah said.
"I couldn't live with myself if I didn't try — all I have to do is try."
