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Palliative Care in Disability Resources

Documents and Tools

Palliative Care Fact Sheets

Southern Metropolitan Region Palliative Care Consortium have developed a suit of fact sheets for staff in disability group homes who are caring for a resident with a terminal illness.

The following fact sheets are available:

Fact Sheet 1 – What is palliative care?
Fact Sheet 2 – ACP
Fact Sheet 3 – Care Planning
Fact Sheet 4 -_Coroner investigations
Fact Sheet 5 – Bereavement
Fact Sheet 6 – Advocacy
Fact Sheet 7 – Dying Process
Fact Sheet 8 – EoL Conversations
Fact Sheet 9 – Dying in place of choice 

Breaking Bad news to people with a disability

Breaking Bad news to people with a disability is a useful guide to assist with breaking bad news to people with an intellectual disabilities.

Click here to view Breaking Bad news to people with a disability.

Disability Distress Assessment Tool

Disability Distress Assessment Tool is used to identifying distress in people with severe communication difficulties.

Click here to view the Disability Distress Assessment tool.

Disability Residential Service palliative care guide

The Disability Residential Service palliative care guide describes the important areas of care to be considered when a person with a disability (resident) has been diagnosed with a life-threatening condition.

The guide enables disability residential staff and their managers to confidently plan and care for a resident at the end of their life.

Click here to view the Disability Residential Service palliative care guide.

Down Syndrome & Alzheimers Disease Booklet

The Down Syndrome & Alzheimers Disease Booklet booklet outlines the relationship between Down syndrome and Alzheimer’s disease.

Click here to view the Down Syndrome & Alzheimers Disease booklet.

End of Life Care for People with Learning Disabilities

The End of Life Care for People with Learning Disabilities guide was written to support those health, social care, voluntary and statutory care providers and deliverers, either in the learning disability or end-of-life care field, who may be involved in caring for a person with a learning disability at the end of their life.

Click here to view the End of Life Care for People with Learning Disabilities guide.

Program of Excellence Palliative Approach (PEPA) Self-Learning Package

PEPA has developed a Disability Services Palliative Care A Self-Learning Package.

Click here to view the self-learning package.

Supporting Older People with an Intellectual Disability to Age at Home: A Manual for Support Staff and Carers

Supporting Older People with an Intellectual Disability Age at Home Manual for Support Staff and Carers provide tools to guide support staff in understanding common health symptoms and conditions that may be experienced by people with a disability who are ageing Managers Guide to Support Older people with a Disability to age at home.

Click here to view the Supporting Older People with an Intellectual Disability to Age at Home manual.

'What If' - Celebrating my life plan

“What if – Celebrating my life plan, enables people and their love ones, to make advanced decisions regarding the person’s wishes in the distant future and to make the most of the present.

Click here to view ‘What If’ – Celebrating my life plan or click here to view an explanation of ‘What If’ – Celebrating my life plan.

When I Die

When I Die is an example of an End of life plan for someone with a disability.

Click here to view the When I Die example booklet.

Useful Websites

Websites are an excellent resource for information for health professionals on policies and procedures, best practice, skills and training, research and publications. Below are valuable websites to assist health professionals with the management of palliative care in the disability sector.

Dying Matters

Dying Matters, let’s talk about it, has great links to assist people with learning disabilities through the dying process.

Click here to be directed to the Dying Matters website.

Office of the Public Advocate (OPA)

Victorian Office of the Public Advocate (OPA) promotes the rights, interests and dignity of people with disability (specifically intellectual impairment, mental illness, brain injury, physical disability or dementia) living in Victoria.

The Public Advocate, provide guardianship and advocacy services for people with disability by:

  • acting as guardian when appointed by the Victorian Civil and Administrative Tribunal (VCAT) to make decisions in the best interests of a person with disability
  • providing advice, education and information to the public, and to health, human services and legal professionals
  • undertaking research and strategic advocacy to improve laws, policies and the delivery of services that affect people with disability
  • supporting people with disability in interviews with Victoria Police, and advocating for the rights of people living in group homes, supported accommodation or receiving treatment in a mental health facility.
    Click here to be directed to the Office of the Public Advocate website.

Palliative Care for People with Learning Disabilities

Palliative Care for People with Learning Disabilities is website about raising awareness of the palliative care needs of people with learning disabilities; sharing and promoting ‘best practice’; Enhancing collaboration between all services providers, carers and people with a learning disability.

Click here to be directed to the Palliative Care for People with Learning Disabilities website.

Disclaimer: GRPCC provides these links for information purpose only and is not responsible for the content of these websites. If you notice any of the links are broken, or would like to suggest additional information resources to be added, please contact us.