Aged Care reform

If you are over 65, the Support at Home program does not recognise progressive, incurable neurological disorders like Parkinson’s, Parkinson’s Plus (MSA, PSP, CBS, & LBD), Essential Tremor and other chronic conditions as the disabilities they are. This campaign demands that it does.

Australia’s aged care system has undergone its most significant overhaul in nearly three decades. On 1 November 2025, the Aged Care Act 2024 replaced legislation dating back to 1997, with the Australian Government investing significantly to restructure both residential and in-home aged care services. As part of this reform, Home Care Packages have been absorbed into the new Support at Home programme.

The Government has promoted the new system as rights-based, but Parkinson’s Australia cautions that this framing requires scrutiny. Under Support at Home, the right is to apply for services. This is fundamentally different from the standard we expect in public health, where the right is to receive support that addresses your clinical needs. For people living with progressive neurological conditions like Parkinson’s, that distinction matters enormously. A one-size-fits-all system that treats everyone the same regardless of how their condition progresses risks leaving our most vulnerable community members without the support they genuinely need just because they are over 65.

What we’re witnessing

The two main flaws with Support at Home are Zero Safety, equals the more you need, the more you pay. The maximum possible care hours/services, 11-13 hours per week, is just not enough. The new model for support at home has priced itself out of care.

In Australia, a person living with an incurable, neurodegenerative condition like Parkinson’s who is under 65 can access the National Disability Insurance Scheme. They receive disability-specific support, including allied health therapies, assistive technology, specialist care coordination, home modifications and funding levels that recognise Parkinson’s conditions as the progressive, fluctuating, life-altering, invisible disabilities they are. If you are diagnosed after 65 and seek support, your disability needs are not taken into account; only aging and frailty are. We are asking that 65 not be seen as just a number that gains you access to aged care supports, but that all support is based on individual needs instead.

Campaign Argument in One Sentence

When it comes to support, the Australian Government asks: ” How old are you? Parkinson’s Australia says it should ask: what do you need?” #needsnotanumber

Why we’re coming together

This campaign is led by Parkinson’s Australia, but it is bigger than Parkinson’s. We are inviting other organisations to join us because the gap in the Support at Home system affects all of us. Different conditions, same failure.

Together, we represent hundreds of thousands of Australians caring for and/or living with conditions that:

• Enter aged care at younger ages with higher and more complex needs
• Have no cure and no meaningful recovery phase
• Progress over time, meaning support needs increase rather than stabilise
• Affect multiple body systems simultaneously – movement, speech, swallowing, cognition, mood, continence, vision and more
• Require ongoing, specialist allied health support, not episodic recovery-focused care
• Place enormous and growing strain on unpaid family carers.

Submissions closed on 31 July 2026. Our submission is #165 found on the Senate inquiry webpage here.