Palliative Care Australia (PCA) welcomes the Federal Government’s NDIS reform agenda but says the changes must deliver coordinated support for people with disability linked to a terminal (life-limiting) illness or risk worsening “bed block” in hospitals.
PCA Interim CEO Simon Waring said the palliative care sector will seek to work constructively with government on the reforms, while ensuring the needs of people with life-limiting illness remain front and centre.
“We recognise the Government’s commitment to strengthening the NDIS and improving its long-term sustainability,” he said.
“These are significant reforms, and Palliative Care Australia wants to engage positively with government on how they are designed and implemented.
“It’s essential people with terminal illness are not overlooked in the process. For this group, the key issue is not simply whether they can access the NDIS. It is whether they can get the practical, day-to-day functional support they need, when they need it, regardless of which system provides it,” Mr Waring said.
PCA National Policy Director Josh Fear said the proposed shift away from diagnosis-based access and towards functional assessments would create uncertainty for many people with life-limiting illness.
“People with terminal illness often have complex needs that can change quickly,” he said.
“The NDIS can provide very important support for some people in this group, but it will never meet the needs of everyone. That is why reform must also address the longstanding gap in supports outside the Scheme – so the NDIS is not the only lifeboat in the ocean.”
Palliative Care Australia is calling on governments to work with the palliative care sector on the design of alternative systems of functional support for people with disability linked to life-limiting illness who cannot access the NDIS.
“This is an opportunity to build a better and more coordinated response, including through a new system of Foundational Supports and stronger supports through mainstream health systems,” Mr Fear said.
“We want to sit down with government and contribute constructively to that work.”
Mr Fear said the palliative care peak body would be advocating strongly on several key issues as the reform process progresses.
“First, people with terminal illness must not be left in limbo as access pathways change,” he said.
“Second, people whose health is deteriorating quickly need to have their support needs met rapidly, regardless of which system is delivering that support.
“Third, clarifying the boundaries between the NDIS and mainstream services must lead to better coordination of care, and not more gaps, confusion or cost-shifting between systems.
“If we don’t get this right, more patients will be stranded in hospital, adding to those who can’t be safely discharged right now.”
Mr Fear said the community must have confidence that people with life-limiting illness are not forgotten as major changes are made to the disability system.
“We call on governments to confirm that this group will be a priority. People with life-limiting illness should not miss out on essential support because they do not fit neatly into one system, or because broader cost pressures are being felt elsewhere in the NDIS,” he said.
“Our message is constructive, but clear: we are ready to work with government on practical solutions, and we will continue advocating for a system that responds with flexibility and compassion to people with terminal illness and their families.”