People living with disabilities at the end of life now have more clarity around who provides the care and supports central to their quality of life.
"Over the last 12 to 24 months, we've been hearing from our members and other voices in the sector that people under 65 with disabilities linked to a life-limiting illness were being refused access to day to day living supports," says Camilla Rowland, Chief Executive Officer, Palliative Care Australia (PCA).
"We are delighted that the recommendations in our recent submission to the NDIS supports review have been actioned; we hope the influence of this reform will soon start to make a difference in how some of our most vulnerable people experience life and death."
Earlier this month, the Australian Government announced some important changes to the NDIS Act and the Rules supporting the Act.
Of most relevance for the palliative care sector and patients is the rule change that clearly defines state and territory health services as being responsible for providing specialist clinical palliative care services, and the NDIS as being responsible for funding functional disability related services.
"Prior to the rule change there was ambiguity, which left NDIS participants who are dying, in the middle of a funding battle between the NDIS and state and territory health systems, which too often left people without any funded support for their disability-related needs," Ms Rowland says.
"Now that we have been able to establish clearer boundaries between state and federal systems, we hope to see better co-ordination between specialist clinical palliative care services, and the functional, non-clinical services funded by the NDIS; leading to better outcomes for NDIS participants and their loved ones."
These changes are now reflected on the NDIS website.
"While this is welcome reform, the NDIS was never intended to fill this gap, and gaps still remain for many people with life limiting illness when it comes to accessing timely care and support," Ms Rowland says.
"The services need to be there for this system to work and provide the care people need at the end of life, and too often that is not the case."
"Governments need to work out how people under 65 with disabilities linked to a life-limiting illness, can access basic care and support at home in their final months and weeks.
"If we can't solve this problem, more and more people will be admitted to hospital unnecessarily, at much greater expense.
"We will have more to say about this critical gap in services in the lead up to the Federal Election."
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