Intellectual Disability Medical ID: Emergency Admissions and Hospital Communication

For a person with intellectual disability, the hardest part of an emergency is often not the illness. It is the strangers, the noise, the questions asked too fast, the decisions made by people talking over them. The Council for Intellectual Disability warns that people with intellectual disability are dying up to 27 years earlier than most people, too often from preventable causes. Communication at the point of care is one of the places that gap can be narrowed. This guide is for people with intellectual disability, their families and their support workers.

Why emergencies are harder

The Council’s fact sheet Going to hospital sets out what usually goes right in a planned admission: a pre-admission meeting, a personal profile, supporters who know the person’s wishes, a plan for discharge. Almost none of that exists in an emergency. The person may arrive by ambulance, without their usual supporter, in a place where — as the fact sheet notes — bright lights, buzzers and regular observations can be disturbing and can lead to behaviours staff misread.

My Health Matters and the “Top 5”

The Council’s My Health Matters folder is an Easy Read folder, made by people with disability for people with disability, to improve communication with health workers. It is available in 12 languages. Inside it is the Top 5: the five most important things people need to know about the person — about their disability, health, behaviour or communication.

The Top 5 is exactly what a stranger needs in the first minutes of an emergency. The problem is the same as with any folder: it is wherever it was left. A medical ID profile can hold the same Top 5, readable from a number on the person’s wrist, wherever they are.

The Council also publishes My Health Cards to help people communicate with their doctor, and runs free online training for health workers, Just Include Me, covering reasonable adjustments, inclusive communication, behaviour as communication, and consent and decision making. If you support someone, it is worth pointing their GP practice to it before an emergency, not after.

What the emergency record should say

Built from the Council’s list, a good emergency record covers:

If the person has epilepsy, our epilepsy management plan guide covers what responders need; for swallowing risks, choking first aid is worth every supporter knowing.

Speak to the person, not about them

The Council’s fact sheet asks supporters to show hospital staff how the person communicates, so the person can tell staff if they are in pain or want something, and to encourage medical staff to speak directly to the person and involve them in decisions. It also notes that hospital staff have a duty to adapt their services to the needs of a person with disability — something that happens better in some hospitals than others, and that families and supporters sometimes need to speak up for.

A line at the top of the profile does a lot of that work before anyone arrives: “Talk to me first. Use short words. Give me time to answer. Show me what you are going to do before you do it.”

Who reads it

Australian resuscitation guidance tells first responders to look for medical alerts. ANZCOR Guideline 2 includes, in the initial assessment of an emergency, checking for “physical (eg. alert jewellery) or electronic alert devices (eg. smartphone application) that may be relevant to assessment or management”. For a person with intellectual disability the readers are:

• A bystander or police officer who finds the person distressed or lost and needs to know how to approach them.
• A paramedic assessing pain, consciousness and history without a supporter present.
• The emergency department, which needs the medicines, the swallowing plan and the person who can consent.

For families and support workers

• Write the profile with the person, not just about them. The Council’s whole approach starts from the person being involved in decisions about their own health.
• Keep the paper version too. The My Health Matters folder is still the best tool for planned appointments and admissions.
• Make sure every shift knows the band exists, and that the first thing to do in an emergency is give the membership number to the paramedics.
• Plan for your own emergency if the person depends on you; our carer emergency plan guide explains how.

If the person is autistic as well, our guide to autism and emergency communication covers sensory needs in more detail.

Keeping it current

Update the record whenever medicines, swallowing advice, living arrangements or support providers change, and after every hospital stay — the Council stresses clear information at discharge about wound care, new medicines and follow-up. A record that still lists last year’s support worker as the first contact is a record that fails at 2am.

FAQs

Sources

• Council for Intellectual Disability — Going to hospital (fact sheet 26) — preparation, emergency admissions, communication and discharge.
• Council for Intellectual Disability — My Health Matters folder — the Easy Read health folder and Top 5.
• Council for Intellectual Disability — Health — health inequality and resources for health workers.
• ANZCOR Guideline 2 — Managing an Emergency — checking for alert jewellery and devices.

Disclaimer: This article is general information about emergency planning for people with intellectual disability, not medical or legal advice. Decision-making and consent arrangements differ between states and territories; check with the person’s support coordinator or a legal service. In an emergency, always call Triple Zero (000). For non-urgent health advice, call healthdirect on 1800 022 222 (NURSE-ON-CALL 1300 60 60 24 in Victoria, 13 HEALTH 13 43 25 84 in Queensland).

Related guides

• Autism and emergency communication
• Epilepsy management plan
• Carer emergency plan
• Choking first aid
• What is MedibandPlus?