Dying with intellectual disability: An overview of end-of-life care for people with intellectual disability in Australia

Dr Andrea Grindrod

Projects Manager and Research Fellow | Public Health Palliative Care Unit; School of Psychology & Public Health | La Trobe University

There is broad consensus within the disability field that the end-of-life care offered to people with intellectual disability should be of a quality consistent with that advocated by contemporary palliative care. There is also broad consensus that the end-of-life care needs of people with intellectual disability are no different to anyone else. In practice however, various barriers are encountered when applying palliative care standards to meet the end-of-life care needs of people with intellectual disability. This presentation provides an overview of the challenges and potential solutions for improving the end-of-life care experiences for people with intellectual disability, their families, carers and support workers. Issues relevant to both the disability and palliative care sectors at systems, policy, sector and practice levels in Australia will be shared.


Andrea is a Research Fellow and the Projects Manager at La Trobe University’s Public Health Palliative Care Unit. She leads a program of research and practice on public health approaches to palliative and end-of-life care and is a member of the Public Health Palliative Care International Council. Her focus combines research, policy and practice development to support participation in sectors not routinely involved in contributing to palliative and end-of-life care.
Andrea is the developer of the Disability Healthy End of Life Program (HELP), an organisational model developed in partnership with disability services in Australia. HELP, a health promotion approach dying, death and bereavement, is featured as the Australian case study in the World Health Organization’s Global Atlas of Palliative Care (2020).