The presentation will focus on the barriers people with disabilities are experiencing in trying to experience a positive end of life journey. This has been informed by National Disability Services engagement with disability service providers, disability workers, people with disabilities, palliative care providers and key stakeholders such as government agencies. We are working with this array of people as we work to find collaborative solutions to address the barriers.   

People with disabilities have the same rights to end of life planning and support as everyone. However, the reality is very different, especially for people with an intellectual, developmental disability and people who require augmentative or assistive communication. 

The barriers to be discussed and their potential for improvement include intersecting areas within health and disability. These are access to appropriate information for people with disabilities their families and carers, capabilities of disability, palliative care and broader health sector workers related to end-of-life stages and supports for people with disabilities, and complexities associated with reporting requirements across Australia when a person with a disability dies.

This presentation will invite conference members to reflect on the barriers identified and how these intersect with their roles and responsibilities for solution focused outcomes. Conference members will be asked to consider how they can contribute to or influence the improvements needed to ensure that people with disabilities can experience a planned and positive end of life journey, with family, carer’s co-residents and workers part of their journey as required.