Resources
We have made several toolkits and resources from this project, many of which are in Easy Read.
- Tailored model of palliative care for people with intellectual disability
The tailored model provides a framework for the delivery of tailored, quality palliative care for people with intellectual disability in Australia.
- Toolkit for health professionals
The Toolkit provides guidance on improving palliative care for people with intellectual disability and has been developed to support the implementation of the model of care.
- Toolkit people with intellectual disability and supporters
The Toolkit is in two parts with information and linked resources to help people with intellectual disability get good palliative care.
- Easy Read story
The Easy Read story is about a person called Joe getting good palliative care. The story aims to help the reader to understand what good palliative care is based on the model of care.
About this project
People with intellectual disability are experiencing increasing rates of life limiting conditions but face multiple barriers to accessing quality palliative care. Further, there is currently no specific guidance or model of palliative care in Australia for services on how to meet the needs of people with intellectual disability.
Between 2021 and 2024, 3DN completed a mixed-methods research examining access to and the impact of palliative care for people with intellectual disability. The linked data studies and stakeholder consultations provide an enhanced understanding of the unique needs of people with intellectual disability with life-limiting conditions and have informed guidance on tailoring palliative care services for this group.
Collective findings were translated into the co-design of a tailored model of care/guidelines and supporting toolkits and resources. These guidance documents aim to improve the quality of palliative care service delivery to people with intellectual disability.
Key project activities included:
- Analysis of palliative care service use by people with intellectual disability in New South Wales (NSW)
- Stakeholder consultations with people with intellectual disability, supporters (including family and paid/unpaid support workers) and palliative care professionals
- An international Delphi survey with experts in palliative care for people with intellectual disability to develop consensus on the components of an optimal model of palliative care for people with intellectual disability in Australia.
Findings from these activities were translated into:
- A tailored model of palliative care for people with intellectual disability to guide all health professionals and service managers involved in the provision of palliative care
- Recommendations on improving national data collection about people with intellectual disability receiving palliative care services (within the model of care document)
- The development, trial and preliminary evaluation of a suite of accessible information resources for people with intellectual disability, their supporters and health professionals to support the model of care
- Two supporting toolkits on improving palliative care for people with intellectual disability
- An Easy Read Story for people with intellectual disability about a made-up person (called Joe) getting good palliative care.
This project was led by UNSW Sydney in consultation with a Project Advisory Group made up of people with intellectual disability, supporters of people with intellectual disability, and representatives from health, disability and advocacy services.
