Advocates are raising concerns about the plight of older Australians with disabilities, who are often left struggling financially, housebound, or forced into residential care due to government funding policies.
The National Disability Insurance Scheme (NDIS) currently excludes individuals diagnosed with a disability after the age of 65, pushing them into the Home Care Package system, which many argue is insufficient for their needs.
Take the case of Gloria, a 77-year-old former foster parent and nursing assistant who recently shared her story with SBS Radio.
Diagnosed with spinal meningioma at 69, she is ineligible for NDIS support due to her age at diagnosis. Instead, she relies on the federal government’s My Aged Care scheme, which provides Home Care Packages capped at just under $60,000 a year. This amount falls short of covering the extensive care required for her paraplegia, spasticity, and chronic incontinence.
Gloria’s daughter, Sarah, and son, David, have stepped in to provide the care she needs, but it’s a heavy burden. Sarah describes the daily routine as exhausting, involving bed positioning, rolling, turning, and heavy lifting. Despite their best efforts, the family cannot afford the necessary therapy to improve Gloria’s quality of life.
“If I had a wishlist, I would like a ceiling hoist through the house to move her, and an occupational therapist to help her learn to make a cup of tea or use the toilet on her own,” Sarah says. Without such support, Gloria remains mostly housebound, with only a weekly trip to church offering some respite from her confinement.
The inadequacies of the Home Care Package system have broader implications. Craig Gear, CEO of the Older Persons Advocacy Network, notes that many older Australians with disabilities face tough choices between basic needs like meals and personal care services. This situation often forces them into residential care, which may not be suitable or desired.
The Government’s response to these issues, the forthcoming Aged Care Act, has so far not provided sufficient reassurance. The draft of the new Act, expected to be introduced to parliament later this year, has been criticised for lacking specific provisions for those with disabilities.
Ross Joyce, CEO of the Australian Federation of Disability Organisations, argues that older Australians deserve support equivalent to what they would receive under the NDIS.
“Why should older people with disability miss out on the relevant supports they need when they’ve contributed so much to society? They seem to be forgotten,” Joyce states.
While the Department of Health and Aged Care claims that the new Aged Care Act recognises the unique needs of people with disabilities, advocates remain sceptical. The Act’s Statement of Principles includes references to individuals with disabilities, mental ill health, and neurodiversity, but there are concerns that this recognition does not translate into adequate support.
For families like Gloria’s, the current system is failing. Sarah refuses to return her mother to a nursing home after a previous negative experience, vowing to continue caring for her at home despite the challenges.
“My mum’s so beautiful. She wouldn’t wish this on anyone. If I didn’t try, I couldn’t live with myself,” Sarah says.
As the government moves forward with the new Aged Care Act, it is imperative that the needs of older Australians with disabilities are not overlooked. Advocates are calling for more comprehensive support to ensure these individuals can live with dignity and receive the care they deserve.
