TRANSCRIPT
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.
"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. Some people think I don't have a mind if I'm sitting in a chair that's got wheels, but I have."
Gloria has a condition called spinal meningioma, leaving her with paraplegia, spasticity and chronic incontinence.
Now 77, 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 and others like her 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 - which means less funded support for her condition.
That leaves the bulk of her care to her daughter Sarah and son David.
Sarah says they took on the role four years ago after moving her out of a nursing home, due to concerns for her health.
"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. 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 her daughter Sarah says her family can't afford the therapy that would improve her quality of life.
"If I had a wishlist, I would like a hoist, a ceiling hoist through the house so that we could move her; an occupational therapist to come out and help make a cup of tea, so she can learn how to make a cup of tea, her own breakfast, use the toilet on her own."
She remains mostly housebound, apart from a weekly trip to church.
"Sometimes I think that I just can't wait till she dies so she could be at peace and she wouldn't be suffering, which is like, it makes me feel so sad to even think that because it's disgraceful. But we just take one day at a time, just got to remain positive. "
Sarah also wants to work but says she doesn't have time.
"I would be working. I'd be getting a job and building up a nest egg so I can create myself a super, so I don't end up like my mum with people having to care for you and nobody caring really."
The CEO of the Older Persons Advocacy Network, Craig Gear, says other people are in a similar situation - and it's led to some difficult choices.
"Choices about continuing to get meals or to get services, the frequency maybe that they have personal care such as a shower in order to be able to afford the goods and equipment; and the levels of support that they need to be able to stay in their home."
The government's long-promised new Aged Care Act will be introduced into parliament later this year [[now expected after 1 July]].
It's a response to the Royal Commission into the aged care sector, with the final report handed down three years ago.
The CEO of the Australian Federation of Disability Organisations, Ross Joyce, says 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. 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 last year.
Craig Gear says he would like to see more measures for those with disability.
"At the moment, we do have some concerns about the levels of support. There's not something specifically that talks about in the Aged Care Act around the needs for people with a disability. However, it does talk about an assessment that's based on the person's individual needs in developing up care plans."
Mr Joyce says much more needs to be done.
"The New Aged Care Act delivers zero for older people with disability. 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 in action."
A spokesman 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.
And says those requiring more support may find it "beneficial to consider... options including residential care”.
Sarah says, after their last experience, she will not return Gloria to a nursing home.
“My mum's so beautiful. She's pure. She wouldn't hurt anyone. She wouldn't even wish this on anyone. Not even them. If I didn't try, I couldn't live with myself if I didn't try - all I have to do is try."
