Creating a low-tech communication backup
Posted: Fri Sep 04, 2026 10:47 am
A printed backup protects communication when a device is charging, broken, unavailable or difficult to use.
Key points to discuss:
- Include a clear yes/no method, pain and body choices, basic needs, people, places and preferred activities.
- Use the same symbols and layout as the main system where possible.
- Add partner instructions: how the person indicates a choice and how long to wait.
- Keep copies in the hospital bag, school, vehicle and with regular carers.
- Review names, medicines, allergies and emergency information whenever they change.
Sources:
- NHS Rett syndrome overview: https://www.nhs.uk/conditions/rett-syndrome/
- IRSF managing Rett care: https://www.rettsyndrome.org/about-rett ... rett-care/
Important: This post provides general information, not individual medical advice. Care and treatment must be personalised by qualified healthcare professionals. If you are worried that someone is seriously unwell, use your local urgent or emergency service.
Key points to discuss:
- Include a clear yes/no method, pain and body choices, basic needs, people, places and preferred activities.
- Use the same symbols and layout as the main system where possible.
- Add partner instructions: how the person indicates a choice and how long to wait.
- Keep copies in the hospital bag, school, vehicle and with regular carers.
- Review names, medicines, allergies and emergency information whenever they change.
Sources:
- NHS Rett syndrome overview: https://www.nhs.uk/conditions/rett-syndrome/
- IRSF managing Rett care: https://www.rettsyndrome.org/about-rett ... rett-care/
Important: This post provides general information, not individual medical advice. Care and treatment must be personalised by qualified healthcare professionals. If you are worried that someone is seriously unwell, use your local urgent or emergency service.