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Resources

Most modules include information about helpful website resources. Here is a full list for your convenience.

 

Your role as a DSP

Disability services supported decision making: A quick reference guide for disability support workers (770kb pdf)
A guide to support people with intellectual disability to make decisions.

Living well: Using person centred thinking tools with people who have a life limiting illness (598kb pdf)
A demonstration of how person-centred planning tools can be applied to end of life.

When I die (634kb pdf)
An example of a completed end of life book from the UK.

Dying Matters: My funeral wishes
A checklist to help people plan their funerals.

My end of life choices book (116kb word) 
A template document to write down end of life choices from Australia.


Handy teaching skills

Handy teaching skills (117kb pdf)
Name and brief description of each of the 10 teaching skills presented in the TEL module Handy teaching skills.


Dying

The dying process (725kb pdf)
A resource designed for the general community that explains what happens during the dying process.

The Books Beyond Words series
Books designed for people with intellectual disability that include only pictures. This allows you to make the story relevant to the client. Topics include ‘Am I Going to Die’ and ‘When I Die’.


Death

The Books Beyond Words series
Books designed for people with intellectual disability that include only pictures. This allows you to make the story relevant to the client. Topics include ‘Am I Going to Die’, ‘Getting on with Cancer’ and ‘Anne has Dementia’.


Loss, grief and mourning

Grief and loss (222kb pdf)
An easy read document about grief and loss developed by NSW Health.

Making a difference toolkit- End of life healthcare
A collection of resources from the UK designed for people with intellectual disability and caregivers.

Grief and bereavement
Resources from Connectability Canada to support a client who is grieving, such as creating a book of memories and planning for the anniversary of a death.

PicTTalk: Keele University
PC compatible software designed by and for people with intellectual disability that can be used to facilitate conversations about illness, life, the impacts of illness, and the future.

Dealing with a bereavement
A collection of resources for caregivers and people with intellectual disability dealing with a loss.  Each resource uses plain language and pictures. Suitable for use by/with people with intellectual disability, with support.

Autism & grief
A collection of resources for autistic adults, family, friends, clergy and professionals.

The Books Beyond Words series
Books designed for people with intellectual disability that include only pictures. This allows you to make the story relevant to the client. Topics include ‘When Dad Died’, ‘When Mum Died’ and ‘When Somebody Dies’.


Bequeathing

Wills for people with intellectual disability (439kb pdf)
A fact sheet about making a will, published by the Intellectual Disability Rights Service in Australia.

An easy to read guide to making a will (320kb pdf)
An example from Ireland about will making, designed for people with intellectual disability.

Workbook: Thinking ahead. My way, my choice, my life at the end (11MB pdf)
A workbook from the USA about end-of-life choices, including bequeathing.


Funeral wishes

Let's Talk about Death (2.7MB pdf)
An accessible booklet about death and funerals for people with Down's syndrome.

When I die (634kb pdf)
An example of a completed plan, including a section on funeral wishes.

Glancing Back, Planning Forward, A guide for planning end of life care with people with intellectual disability (2MB pdf)
An easy read planning tool to help people talk about what they would like to happen at their end of life, including funeral wishes.

My plan for a good life, right to the end
An easy-read plan template to help people plan what they would like to happen at their end of life, including funeral wishes.

Getting organised before you die (1.6MB pdf)
An easy read list from the UK about making plans for dying and death, including funeral planning..


Care when dying

Living well: Using person centred thinking tools with people who have a life limiting illness (598kb pdf) 
Document designed for people who are dying, including those with intellectual disability.

Appoint an enduring guardian: NSW Government
Information and short videos designed for the general community.

Mike's Journey: Developmentally Disabled Facing Hospice Care
Website designed by a family about their family member.

Workbook: Thinking ahead. My way, my choice, my life at the end (10MB pdf)
A workbook people with disabilities who are dying to make end-of-life choices.

Video: Thinking ahead. My way, my choice, my life at the end
A short video (duration 9:51) about how to use the above Workbook: Thinking ahead. My way, my choice, my life at the end.

Case study video: Thinking ahead. My way, my choice, my life at the end
A short video (duration 8:32) about why to use the above Workbook: Thinking ahead. My way, my choice, my life at the end.

Palliative care easy read resources
A collection of easy read booklets from NSW. Some include information about decision-making options, including advance care planning.

Palliative Care for People with Learning Disabilities (PCPLD) Network
A website that brings professionals and people with intellectual disability together to improve palliative care, including a collection of resources.

Advance Care Planning resources
A collection of resources about advance care planning with people with intellectual disability including a plan template, guidance about how to help a person make a plan, and guidance about policy development.

Resources to support end-of-life planning
A website of available end-of-life planning resources designed with and for people with intellectual disability.

Advance Care Planning Australia
A comprehensive website for the general community about advance care planning in Australia. Has information on understanding advance care planning and state-by-state information on creating a plan, including appointing a trusted person you make health care decisions for you if you if you are no longer able to do so.


Organ and tissue donation

Donate Life
Includes information about donating organs and tissues in Australia.

Australian Organ Donor Register
A webpage where you can sign up for the Australian Organ Donor Register.

What is organ and tissue donation? (952kb pdf)
An easy read fact sheet from Scotland describing organ and tissue donation for people with intellectual disability and caregivers.

Page last updated 21 February 2024

Artwork is by and in memoriam: Derek Coyle (1960-2014), an artist supported by Sunshine’s Community Access Program Art Studio

 

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This project is supported by funding from the Australian Government Department of Health under the Public Health and Chronic Disease Grant Program.

 

We would like to acknowledge the traditional custodians of this land and pay our respect to elders past, present and emerging.