TOOLS & RESOURCES
- “Talking End of Life…with people with intellectual disability” – This website from Australia is an excellent resource with modules that cover multiple topics related to death and dying.
- Caresearch – Website with a dedicated page for people with intellectual disabilities.
- Breaking Bad News – Website from England offering guidance on how to break bad news to people with an intellectual disability
- Coalition for Compassionate Care of California (CCCC) – An interdisciplinary partnership providing information and resources for palliative care with a section on developmental disabilities
- Thinking Ahead Matters: Supporting and Improving Healthcare Decision Making and End of Life Planning for People with Intellectual and Developmental Disabilities
- Thinking Ahead Booklet – Pamphlet developed by people with an intellectual disability on how they would want to be approached in a discussion of End of Life.
- Disability Distress Assessment Tool (DisDat): While the patient still has natural behaviors you can use this to document and label the behaviors as a baseline with hospice staff. Note: DisDat may look complex and intimidating at first, but it is actually quite simple and is especially helpful for volunteers not familiar with the IDD patient/family member.
- Pain Assessment IN Advanced Dementia (PAINAD): PAINAD helps you quantify pain in the patient who is non-verbal.
- Medication Management Chart: Document to record drug name, dosage, and frequency to be given to manage medications.
- Medicine/Behavior Chart: Document to record drug, dosage and most importantly, the behaviors that are associated with the drug. Everyone reacts to drugs differently so this chart is unique for your loved one.
READING AND REFERENCE LIST
This reading and reference list are articles, books, DVDs and websites as a starting point. Items in italics are those that were most meaningful to me on my hospice and grief journey. Each individual’s grief journey is unique, and you will have to search to find material that speaks to you. My recommendation is to just keep searching until you find the material that helps you the most.