Family / Close others
Emergency Department
People with intellectual disability who live with family are usually accompanied to hospital by a family member or close other. If they live in supported accommodation, they may be accompanied by a direct support worker.
In these scenes, Curtis is accompanied by Ray, his father, and Jeff is with Amelia, his disability support worker, who is joined by Lynne, his sister. In last scene of Amelia with Sonia, a doctor, Lynne is absent.
Applying the Framework
Knowing that
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The number of people in the hospital emergency waiting area doesn’t reflect what is happening within the Emergency Department itself.
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Ambulance arrivals are not seen by people in the waiting area, but contribute to how busy it is in Emergency.
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A nurse triages each patient on arrival, ranking the urgency of their medical/ health problem.
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Patients are seen according to the urgency of their condition as assessed at triage rather than the time of their arrival.
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Hospital staff may not know that people with disabilities often express pain and distress through their behaviours, facial expressions and vocalisations.
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Doctors in Emergency make a diagnosis as quickly as possible, and try to avoid unnecessary investigations.
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Easy access to recent assessment results, such as X-rays or blood tests, reduces time in Emergency and avoids unnecessary procedures.
Informing
As a parent or close other you need to
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tell hospital staff how you know that your family member is in pain and unwell
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alert hospital staff when your family member shows signs of getting worse
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repeat information for different hospital staff as you move to various parts of the Emergency Department
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answer hospital staff questions as specifically as possible and avoid information that may not be needed or relevant at that time
Collaborating is when you
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stay calm during extended waits and tell hospital staff when and why you become worried about your family member
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share information about how to best support your family member with disability support workers, if they are with them when they go to hospital
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if relevant, work with your family member's disability support worker or other house staff to develop a Hospital Passport or other written information that goes with them to hospital
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make sure the Hospital Passport (or similar document) contains your contact details and/or those of a person with power of medical attorney or knowledge of the person's medical history
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ensure you have given disability support workers permission to give your contact details to hospital staff
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are contactable if you are not at the hospital
Supporting
Your family member will be supported when you
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stay calm when they are distressed
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anticipate good care even if you have had previous negative hospital experiences
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explain to your family member what is going to happen in ways you know they will understand
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advocate for your family member by informing hospital staff about their needs and working with hospital staff to come up with possible ways to meet these needs
Summary
Knowing something about the hospital system will be useful background when you accompany a person with intellectual disability to hospital.
Hospital staff in Emergency Departments prioritise patients according to the urgency of their presenting problems. Long waits are frequent, but can be difficult for people with intellectual disabilities to tolerate. Family and close others may expect problems because of previous negative hospital experiences. Problems can be avoided by collaboration with hospital staff and disability support workers (if relevant), beginning with sharing information about the person's needs as well as their presenting problems. Having someone present or contactable who can answer questions about the patient's presenting problems and history will smooth the way to accurate and efficient diagnoses and treatments.
You can find further information in Resources about hospital emergency department processes.
Activities
These are provided to support your learning, individually or in a group. You can write responses in the workbook sections available for download.
Consider experiences you have had accompanying your family member with intellectual disability to an Emergency Department. In the workbook provided,
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List features of an Emergency Department that present particular difficulties for your family member.
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Identify the supports that did or could have helped reduce distress for your family member or you.
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Describe how hospital staff eased that distress or how they could have eased it.
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If your family member lives in supported accommodation, such as a group home, do you know if they have a document/ folder/ hospital passport with information that should be shared with hospital staff?
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If yes, list the type of information in the document/ folder/ hospital passport.
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If not, list the information you feel should be in the document/ folder/ hospital passport.
(You may want to download the template for a Hospital Passport under the Resources tab and complete it.)