22nd May 2024
Disability Services Commissioner staff attended a forum to listen to people with a disability and a life limiting condition and professionals working in the field discuss their experiences and thoughts on how best to support people with end of life and palliative care planning.
Session one looked at the challenges of accessing a dignified death for people with a disability. This provided details on ways to include people in the discussion of their life limiting illness and ways of using specialist services such as palliative care in planning and in providing supporting resources. A lived experience panel talked about wanting to be involved in discussions about death and the grief they felt of losing friends through a life limiting illness.
Session two considered ways that services could provide access to excellent palliative care for the people they support who are living with a life limiting illness. This session included a discussion on the role of clinical nurses, disability support workers and Disability Liaison Officers in hospitals.
The Disability Liaison Officer program was established during the COVID-19 pandemic to improve access to healthcare for people with a disability. This included access to COVID-19 vaccination, testing and support.
Over time the program has supported people with disability to access other healthcare needs. Most people seek help for essential health needs, such as:
- help with barriers to booking appointments
- arranging reasonable adjustments
- mobility/physical support
- communication assistance
- psychosocial support.
Disability Liaison Officers (DLOs) are also driving longer-term health service and system improvements projects.
A list of the hospitals that have DLO is on the link below: https://www.betterhealth.vic.gov.au/health/servicesandsupport/disability-liaison-officer-program
A representative from The Coroner’s Court gave a talk on its legislation related to reportable deaths.
Session three concluded the day with a ‘where to from here’ panel discussion. The panel discussed what is working and needed to ensure that people with a disability receive the best care and their needs are recognised and planned for.
A video was shown that was made by the Indigenous Program of Experience in the Palliative Approach and Program (IPEPA) and the Program of Experience in Palliative Care (PEPA) a collaborative organisation that helps break down the barriers to palliative care for Aboriginal and Torres Strait Islander peoples across Australia. They have a range of resources and videos. See website: https://pepaeducation.com/about-ipepa/resources
The National Disability Services with input from Victorian Disability and Palliative Care Advisory Group have developed and launched a website to allow information to be shared and to provide resources and training options.
It is attached below:
Palliative Care, life limiting illness, and support for people with a disability
Any queries can be directed to contact@odsc.vic.gov.au or call our office on 1800 677 342.
