Responding in an emergency situation


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Responding in an emergency situation

Jan 17, 2024


Our community values and supports all first responders. Responding to a call that involves a person living with PWS can be challenging. Determining individual ‘capacity’ is problematic, together with recognising and understanding syndrome related ‘behaviours of concern’ that may be displayed in an emeregncy. These resources guide an effective response.

People living with PWS can find themselves in difficlties due to their high anxity, misunderstandings, and acute health issues. It is not uncommon for people living with PWS to be in contact with various emergency services such as police, ambulance, emergency departments, the fire brigade, courts and others. As well as having an intellectual disability, the person has other cognitive impairments and may have a mental illness too.

Communicating with a person who has PWS in an emergency

Have a calm and confident manner. Introduce them to any colleague who may also have an interaction. Avoid distractions. Tell them about what to expect and what is going to happen next. You may need to repeat yourself. They may ask the same questions again and again whilst trying to understand the information.
Speak in simple short sentences. Allow enough time for the person to think and respond. Do not give, or ask for too much information at one time.  Break any multi-faceted questions or explanations, and multi-stepped directions into a series of single requests or statements. Be clear when giving instructions or directions. Guidance, without hurrying can help people with PWS to feel secure and not become so overwhelmed or anxious. Identify a person of higher authority to whom the person with PWS can relate, in terms of ‘this is why we need to do it this way’.
Be specific in your questions or requests and prime them with the context and reason first – for example “When a person has an injury like this, the safest thing to do is go to hospital. Do you think you should go?” Explain protocols simply. If necessary ask the person with PWS to repeat back to you what you have said. Although the words are understood, the associated importance is often missed. Include a parent, guardian or support worker if requiring accurate or important information from, or to be given to, the person with PWS. Be aware of the person’s physical capabilities.

When a person with Prader-Willi syndrome is in trouble with the law – Issues to consider.



The Victorian PWS Association made a fantastic kit to assist those living with PWS, and those first to respond in an emergency situation. The kit was developed in consultation with emergency service operators.

The kit can be found here and includes:

  • PWS Emergency Wallet Card
  • Understanding PWS and how you can support me – Flyer
  • Connecting with your Support Teams – Booklet
  • Connecting with your Support Teams – Booklet (Easy-To-Read Version)
  • Voluntary Disclosure for Police – Document
  • Voluntary Disclosure for Paramedics – Document
  • Law, Justice & PWS – Booklet


Get in touch

We welcome enquiries about anything related to PWS. This could be about the changes through the life stage of living with PWS, individual needs, services, getting help or interacting with the NDIS, the Quality and Safeguards Commission or the AAT.

Contact us