Bridging the gap: Palliative care for people with disabilities
An article written by Karen Kessner, Project Officer, Aged Care and Disability Strategy, North and West Metropolitan Region Palliative Care Consortium
People with disabilities and their carers* have long had to advocate for equitable access to health care. Despite progress, significant barriers still exist in obtaining diagnoses and treatment for routine health conditions. When it comes to palliative care, these challenges become even more complex.
In late 2022, several advisory groups in Victoria combined their expertise to form the Victorian Statewide Palliative Care Advisory Group. Their goal: to address the challenges disability service providers face in accessing palliative care services.
Both disability services and palliative care work from psychosocial models of care, placing the individual at the centre of support. This shared philosophy offers common ground, yet traditional service structures have led to limited understanding of each other’s roles—potentially contributing to poorer outcomes for people with disabilities.
As part of the advisory group’s initial exploration of presenting issues, a review of the literature was conducted to assess existing knowledge. This review informed the group’s priorities and contributed to a pratice insights document for Yooralla.
The findings were compiled iteratively, resulting in a report that outlines key barriers and enablers in delivering palliative care to people with disabilities. While many obstacles persist, evidence supports targeted interventions that improve outcomes for individuals with disabilities, their carers, and health services alike.
Key Priorities:
The report highlights several priorities for improving care:
- Education and training across health, disability, and palliative care sectors
- Enhanced communication, especially around advance care planning and bereavement
- Cross-sector training to build mutual understanding
- Further research into effective models of care
- Champion roles for people with disabilities to function as navigators across complex service systems
The report also uncovered systemic issues, including embedded discrimination and inequitable resource allocation. Despite these challenges, the advisory group has used the findings to develop practical resources and promote education opportunities.
One such resource is the Disability Palliative Care Assessment Tool, designed to help identify and name signs of deterioration. This tool is now available through a national resource platform, alongside other disability-focused palliative care materials.
Looking Ahead
Future projects include developing disability-specific education materials and consultation processes to improve understanding of advance care planning for people with disabilities. The insights from this report are already helping organisations highlight service gaps and find resources to address them.
* The term ‘carers’ refers to professional, paid and unpaid carers
You can read the full report: Barriers and Opportunities to Palliative Care service provision for People with lived experience of a disability
Image courtesy of Economic Commission of Africa
Author
Karen Kessner
Project Officer, Aged Care and Disability Strategy
North and West Metropolitan Region Palliative Care Consortium