MND Australia

Statement on the gap in continuity of care for people with life-limiting conditions

It's time for the buck passing to end.

Recent articles published by the ABC and The Conversation highlight the critical need for there to be absolute clarity between the States, Territories and the Commonwealth governments regarding the continuity of care of patient consumers with life limiting conditions.

President of MND Australia and 2023 WA Australian of the Year, Professor Samar Aoun says, “All people with life limiting conditions have the right to access appropriate supports and services including palliative care.”

Currently, people with life-limiting conditions that cause disability are facing immense uncertainty about where and how they will receive appropriate supports. MND Australia understands that whilst the National Disability Insurance Scheme (NDIS) is a national scheme, it has very particular criteria and is not always available to all people with life limiting conditions, although they may be disabled by their disease. This leaves a gap in service provision for these people which creates uncertainty and confusion for them.

MND Australia wishes to assure our motor neurone disease community that, to date, we have had no indication that any person with MND has been denied access to the NDIS on the basis of prognosis.

However, MND Australia strongly urges the respective State, Territory and Commonwealth governments to seek clear solutions to this deeply concerning gap in the provision of care.

“The 'no wrong door' pathway must be upheld across all levels of government when providing services to patient consumers, this includes access to appropriate disability supports and palliative care,” says Prof Aoun.

Additionally, MND Australia notes that the Disability Royal Commission (DRC) has made a specific recommendation (4.9) regarding the right to access equitable health service for people with disability in volume 4 of its final report – Realising the Rights of People with Disability.

With the final report on the Independent Review of the NDIS due any day and the strong recommendations from the DRC, now is the time for State, Territory and the Commonwealth governments to work together and finally address this shocking failure of continuity of care.

“We must stop the buck passing now,” says Prof Aoun.

“These vulnerable people cannot keep being subjected to the tyranny of silos of our support systems, so demeaning for members of our society who have little time left to live with dignity. It diminishes people’s quality of life and breaches patients' right to equitable access to health and disability services, regardless of their condition or location.”

Much of my time was spent trying to wrangle supports and appointments whilst trying to deal with caring for my husband in the face of his terminal illness diagnosis . . . three months of stress and trauma trying to get the right care and support services in place instead of worthwhile time together. . . . The process, not his illness, exhausted us both and I believe took him before time. Quote from a former carer for someone with MND