The palliative care sector has welcomed news of a new, faster pathway to better meet the needs of people living with disabilities and a terminal diagnosis.
‘For over 12 months, PCA, our members, and organisations like the Peace of Mind Foundation have been highlighting a growing group of people under 65 unable to access day to day, functional living supports during their last years, months, and weeks of life,’ said Camilla Rowland, Chief Executive Officer, Palliative Care Australia (PCA).
‘People and families have been falling through gaps that exist between health and care services, and we are pleased that our collaborative advocacy efforts have been heard and led to these changes.’
The National Disability Insurance Agency (NDIA) says the new Priority Access Application Pathway will ‘enable faster NDIS decisions’.
The NDIA has provided PCA with the following information:
- The NDIA is committed to delivering a positive experience to our more than 646,000 participants, their families, carers and the wider disability community. The NDIA recognises that some people with terminal illness and disability are falling through the gaps in health and community services, where palliative and health care services may not be meeting their support needs arising from disability acquired or related to their illness. The NDIA wants to ensure that people with disability arising from a terminal illness have their access to the National Disability Insurance Scheme (NDIS) assessed quickly, so they can access disability related supports that can be funded within existing legislative and policy settings.
- The NDIA has made some operational changes to streamline the access and planning pathway for people with terminal illness and disability. From Wednesday April 3, 2024, we put in place a Priority Access Application Pathway for people with a terminal illness. This has enabled the NDIA to better work with all participants with terminal illnesses, and the health system, to ensure participants seeking access are prioritised for assessment of their applications. The NDIA will make a decision within 5 business days of a complete application being received, on whether a person with a terminal illness is eligible to access the NDIS for disability supports.
- This priority pathway extends through to the planning process, if someone with terminal illness and disability meets access to the NDIS, they will have their first NDIS plan approved within 30 calendar days of becoming a Scheme participant.
Significant interest
Since the commencement of the pathway in April, the team report that they have received over 130 referrals. Of those more than 80 are new participants to the NDIS who were supported with prioritised access, with over 90 plans have been approved for participants in the pathway.
People with terminal illness and disability who wish to apply for NDIS access through the pathway can do so via Hospital Liaison Officers if they are in hospital, the NDIS Partners in the Community (such as Local Area Coordinators) or by calling the NDIA on 1800 800 110.
This new priority pathway has been developed thanks to feedback from peak bodies who have been championing the needs of people with terminal illness and disability.
Gaps remain
‘Overall, this is very welcome news but it’s important to note the gaps that remain and the growing demand on health and care systems,’ said Ms Rowland.
The NDIA has emphasised that, ‘The health and community services operated by states and territories remain responsible for providing palliative care to people with terminal illness, with or without associated disability’ and ‘Those people who are eligible to become NDIS participants should still expect that health and community supports provided by states and territories will meet their palliative care support needs.’
Camilla Rowland says over time, many services outside the NDIS that people with a terminal illness rely on have experienced reduced funding, been reprioritised, or closed, despite the growing need in the community.
‘The NDIA themselves have acknowledged that in the last 12 months alone the number of people with a terminal illness seeking access to the scheme has doubled,’ she said. ‘While this new NDIA pathway will allow for more timely responses and deliver supports to some people, others will miss out.
“We look forward to the Australian and State and Territory Governments explaining how they will fill the gaps that remain in basic support for people,’ said Mr Rowland.
‘Until those issues are resolved, many people and families – some of the most vulnerable in our community – will continue to miss out.’
