Palliative Care for people with disabilities
End of Life and Palliative Care for People Living with a Disability
The Better Health Channel provides end of life and palliative care information for people living with a disability including planning ahead, choosing a preferred site for care, and advance care planning. Click here for more information.
Palliative Care Easy Read Resource
Palliative Care Victoria and VALID have created new easy-to-read and easy-to-digest tools and resources to help people have those difficult conversations and to help professionals talk to people living with a disability about palliative care, death and grief. You don’t have to navigate those challenging discussions on your own. Click here to access these resources.
Yooralla Palliative and End of Life Care for people with disability Resource
Yooralla has published the “Palliative and end of life care for people with disability” resource which was developed with consultation with disability and palliative care experts and reviewed by consumers prior to publication. Click here to go to the Yooralla website and read their insights into practice.
National Disabilities Services Palliative Care Resource Links
National Disabilities Services has also developed an excellent resource page, Palliative Care, life limiting illness, and support for people with a disability. This page will continue to grow as new resources are developed and identified. The page includes is the Disability Palliative Care Assessment Tool which assists disability support carers and team leaders to identify deterioration in people with a disability.
Victorian Government Department of Health: Disability information
The Victorian Department of Families, Fairness and Housing has a disability webpage that provides a range of information for people living with a disability. Click here for information about National Disability Insurance Scheme (NDIS).
The Office for Disability
The Office for Disability is the first of its kind in Australia and leads the Victorian Government’s drive for universal change to improve the lives of people with a disability.
The office was set up to work with private and public sector partners to promote the government’s long-term vision for inclusion and help improve community attitudes.
Palliative and End of Life Care for people
with disability
In consultation with the North and West Metropolitan Region Palliative Care Consortium, Yooralla has published the “Palliative and end of life care for people with disability” document. This document is aimed at service managers and care workers nationally. The document has been developed with consultation from disability and palliative care experts and has undertaken a consumer review prior to publication. Click here to go to the Yooralla website and read insights into practice.
Talking End of Life …with people with intellectual disability (TEL)
Helping people with an intellectual disability to learn about dying and death just as they learn about every other aspect of life is really important. Teaching about the end of life is hard though. Talking End of Life …with people with intellectual disability (TEL) shows you how to teach people with intellectual disability about the end of life. TEL is designed for disability support workers but is also helpful for others including families, health professionals, and educators. Click here for link.
Go to the Modules tab to start using TEL.
Webinar on Grief and loss in the disability sector
This one-hour video explores the range of issues related to disability and grief. It includes information about understanding grief theory and key concepts and applies these to the wide world of disability. The presenter is Meg Moorhouse, Clinical Lead, Bereavement Program at Melbourne City Mission Palliative Care.
Breaking barriers: A tailored palliative care model for people with intellectual disability
People with intellectual disability face multiple barriers to accessing high quality palliative care. A research team at UNSW Sydney has collaborated with leading academics and clinical service providers to conduct a mixed methods study examining palliative care use by people with intellectual disability. Resources and toolkits are free to download from the project website.
Pain Assessment
Wong Baker Faces tool: A pain assessment tool developed for use in children, suitable for anyone over the age of 3.
Abbey Pain Scale (125kb pdf): A pain assessment tool developed for use in those with dementia who are unable to communicate.
This guide is for Disability Support Workers in supporting people living with disability and especially those who also have a serious or life-limiting illness. Whether your role is in the community, hospital or residential care setting, you will no doubt be involved in providing comfort and support to people living with disability who have serious illness and are nearing the end stages of life.
PEPA/IPEPA aims to help you develop your skills, knowledge and confidence in the palliative approach to care and educates you on how to:
• Provide support and comfort
• Manage symptoms
• Reduce stress and anxiety
• Give support to family and friends.
Click here to access the guide.