This week, Fight Parkinson’s has lodged a public submission to the Australian Government’s consultation on the new Individual Disability Advocacy Program (IDAP). Our submission draws on clinical, lived experience, and service delivery expertise to highlight the advocacy needs of people living with Parkinson’s and rarer Atypical Parkinson’s conditions, including Progressive Supranuclear Palsy (PSP), Multiple System Atrophy (MSA), and Corticobasal Syndrome (CBS), and how a new IDAP can better support them across complex, changing care journeys. 

People living with Parkinson’s often navigate multiple systems, including the NDIS, My Aged Care, hospitals, and primary care, and advocacy needs commonly arise at different stages across a long and progressive disease trajectory. In our submission, we emphasise that effective advocacy must work as a continuum, from supported self-advocacy and system navigation, through to independent advocacy where escalation is required. 

Key messages from our submission

• Advocacy must be timely and available across the lifespan of neurodegenerative conditions, not only at crisis points. 

• Condition-specific and community-based organisations play a vital role in early identification, supported self-advocacy, and warm handovers to formal advocacy services.  

• The proposed three-stream approach — a Service Delivery stream, a National Advocacy Helpline, and a Sector Strengthening stream — aligns with how people seek help and should be implemented with strong referral pathways and coordination.  

• Investment in training and sector capability is critical so advocates can respond to the complexity of progressive neurological conditions. 

What we asked for

We recommended the program explicitly recognise the role of trusted condition-specific organisations, support longer funding periods for local advocacy, improve interfaces with aged care advocacy, and strengthen data collection to capture unmet demand and longitudinal advocacy needs.  

We are proud to represent our community in this national policy conversation, and we will continue to advocate for systems that are fairer, safer, and easier to navigate. 

Read the full submission

Read our full public submission to the IDAP consultation by clicking the link in the ‘related resources’ section on this page.