Parkinson’s Australia says older Australians with progressive, incurable neurological disorders are falling through the cracks of the federal government’s new Support at Home program. They say over 65s with Parkinson’s, Parkinson’s Plus, Essential Tremor and other chronic conditions aren’t having their disabilities recognised by the recently restructured in-home aged care services program.
Parkinson’s Australia CEO Olivia Nassaris says the Support at Home aged care system simply isn’t working for people with Parkinson’s and other progressive illnesses – or their carers. ‘87,000 older people have been assessed and approved for home care packages, but have not yet received one or are waiting on an increased level of support,’ Ms Nassaris said.
‘There is no use being assessed as high needs Level 8 if there is no package to actually provide the services. If you’re diagnosed with Parkinson’s at 66, you go into the aged care system – full stop – there’s no choice, no alternative, and no guarantee the support you receive will match the complexity of your condition.
‘That’s why we’re launching our #NeedsNotaNumber campaign for a system that looks at what you actually need, not just the number of years you’ve lived.’
Case study
Parkinson’s Australia says self-funded retirees Wayne and Olga are languishing in the failing Support at Home aged care system.
Wayne, 79, has advanced Parkinson’s disease and in December suffered a fall and broke his femur. Wayne and Olga have been registered for aged care for four years and Wayne has been assessed as needing the highest level of care – Level 8.
His Parkinson’s symptoms include tremors and difficulty swallowing, which means he needs in-home allied health treatment including speech therapy.
The family has used all available rehabilitation care and privately funded as much respite and home care as they can afford, as well as about $3000 worth of mobility and bathroom equipment. They’ve even borrowed an old wheelchair from a friend, which they can only use when daughter Melanie is around because it is too heavy for her mother to push.
Melanie has been navigating the system since January, advocating for her parents but so far has been unable to unlock the Support at Home care her parents need.
Recognition needed
Ms Nassaris says people with Parkinson’s, Essential Tremor, Parkinsonism and other chronic conditions are seeking recognition of their progressive conditions in the Support at Home framework.
They want to see ongoing allied health therapies funded and NDIS participants over 65 protected from losing their disability supports.
‘When the system falls short, families fill the gap and carers are not a free resource,’ Ms Nassaris said.
‘The hidden cost of inadequate support is paid every day by the people who love someone with a chronic condition. The system is failing to help the people it was meant to help – people like Wayne and Olga.’
