Fix for NDIS – palliative care gaps hopefully coming soon

Advocacy efforts for people under 65 years denied care through the NDIS are being heard at the highest levels of government with Palliative Care Australia (PCA) confident of a positive outcome.

“The palliative care sector has been expressing concern since June last year that people under 65 years with cancer or other life limiting illnesses have been falling through the gaps that exist between the NDIS, aged care, and health systems,” says Camilla Rowland, Chief Executive Officer, PCA.

“These are some of our community’s most vulnerable people – people with disabilities connected to a terminal disease. They often need government-funded daily living and functional care supports which are critical to remaining at home during the time they have left.

“Without the right support, many of these people end up in hospital – not because they need acute clinical care, but because the assistance they need is not accessible either through the NDIS or from state and territory health services.”

PCA has been working in partnership with our members and organisations like the Peace of Mind Foundation (which supports people with brain cancers, who have been especially impacted). Our collective advocacy efforts have resulted in these issues being heard across government and, in some cases, has resulted in ministerial intervention.

“We are grateful for the active role Minister Shorten has been playing and remain confident that government is working on long-term solutions,” Ms Rowland says.

“We hope there may be good news on that front in the May Federal Budget.

“However, while we wait for that news, we still need to make sure people needing care get it straight away. These people are dying, and time becomes even more critical and precious.”

PCA is calling on government to announce immediate solutions, such as the plan laid out in our Federal Budget Submission. PCA’s proposal costs $77.6 million over three years and would help at least 3,000 people and families.

“We’re also encouraging people under 65, who are living with disability as a result of a life-limiting illness and have been refused access to day-to-day functional living supports from the NDIS to make contact with PCA,” Ms Rowland says.

“The carers, family members, clinicians, and health services who support them, can also reach out to PCA.

“The minister’s office has asked us to be a point of contact and PCA is happy to keep playing that role if it means people get the care they need.

“We will also keep pushing for a fairer, more sustainable fix for this issue long term.”

Initial inquires to PCA can be made via

PCA’s 2024 Federal Budget Submission outlines a number of immediate and long-term actions to resolve this issue, not just for the brain cancer community but anyone under 65 years with a life-limiting illness.

A two-page summary as well as PCA’s full 2024 Federal Budget Submission is available on the PCA website.