Poor access to care is common despite significant palliative care needs

People with intellectual or cognitive disability have limitation in mental functioning and skills such as communication, self care, and social interaction. Among Australians with disability (all forms), 6.5% have intellectual and developmental forms, and 2.6% have dementia. People with disability are present within all sections of the community, including Aboriginal and Torres Strait Islander peoples, LGBTI communities, and homeless people. Each person with intellectual disability will have their own individual experience of living with disability. Poor access to care including palliative care is often part of this experience.

Why palliative care matters

People with intellectual disability often experience significantly poorer health than those without. In general people with a disability are more likely to develop a health condition, and those with a health condition are more likely to develop a disability. The life expectancy of people with intellectual disability is 25 years less than the general population.

Common barriers and outcomes

Some of the barriers to accessing palliative care services may include delays in seeing the GP due to cost, waiting longer to see a medical specialist, and poor access to assisted transport services for appointments to specialist services. Lack or limited understanding of death, dying and palliative care is also a barrier to accessing care.

Overcoming the barriers

Communicating effectively with people with intellectual disability is important to understand their needs and put them at the centre of their care. Here are some examples of what may help:

  • Often people with intellectual disability have difficulty expressing when there is something wrong or their condition changes. Learning to recognise the signs of change or deterioration and educating people with intellectual disability can help.
  • Many people with intellectual disability are cared for by family members. Understanding carer strain on older relatives and providing support with advance planning can assist with this.

Learn more

To learn more about people living with disability, visit the Australian Government Department of Health Exploratory Analysis of Barriers to Palliative Care - Issues Report on People with Disabilities and the Aged Care Diversity Framework (3.25MB pdf)

This information was drawn from the following resources:

Last updated 02 August 2021