Family / Close others
Ward Stays
In these scenes, you will again meet Jeff and Cassandra. The accompanying person is Lynne, Jeff's sister, or Frank, Cassandra's father. In one scene, Johnno, Cassandra's disability support worker is also present. In each scene, they are interacting with a ward nurse.
Applying the Framework
Knowing that
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Patients' pre-existing health problems are not always flagged in the medical records or known by ward staff.
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Hospital staff are not always available to assist patients with personal care needs, such as eating.
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Some, but not all hospitals or wards, will have a Disability Liaison Officer who can provide support for patients with disability and their families.
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Some, but not all hospitals or wards, will be able to call on staff whose role is to provide personal care.
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The involvement of a disability support worker during a client's hospitalisation will depend on
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the policy of their employer, or
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if their client is an NDIS participant, whether support during hospitalisation is included in their plan
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Informing
As a family member/ close other of a person with intellectual disability, you may need to share the following with hospital ward staff
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their health conditions that may not be related to the current hospitalisation
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the types and amount of support they need for basic care
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how to provide them with basic care and reduce the chance of triggering other health conditions and/or distress
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how to read the facial expressions, vocalisations or behaviours of people with little or no speech, and how they use signs, pictures or a device to communicate
Collaborating is when you
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tell hospital staff your family member's support needs and health conditions, and your concerns
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advocate for their needs, repeatedly, if necessary (such as with new staff)
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work with hospital staff and, if present, disability support workers, to suggest and implement ways to meet the person's needs
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accept that the hospital may or may not be able to implement your suggestion(s)
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accept the help that hospital staff can provide
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negotiate sharing tasks with hospital staff, and if available, disability support workers
Supporting
Your family member will be supported when
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you advocate for their needs
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adverse medical events are avoided
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their basic and personal care needs are met
Summary
Knowing something about the hospital system will be useful background when you accompany a person with intellectual disability to hospital.
People with intellectual disabilities have high rates of health conditions. These health conditions may or may not be the reason for the person's hospital stay. Many will have personal care needs, which can go unmet unless there are hospital staff dedicated to this role. Not all hospitals or wards have access to staff in these roles, leaving the person with intellectual disabilities dependent on family members and/ or disability support staff. Hospitals may have Disability Liaison Officers, who may be able to negotiate personal care for patients with disabilities.
Good quality hospital care for people with intellectual disabilities relies on ensuring both their health and personal care needs are met, which is most likely when hospital and disability staff (if present) and family collaborate through sharing information and responsibility for implementing solutions.
You can find further information in Resources about intellectual disability frequent health concerns, hospital Disability Liaison Officers, and the NDIS and hospitals.
Activities
These are provided to support your learning, individually or in a group. You can write responses in the workbook sections available for download.
To assist you to collaborate with staff on a hospital ward in the care of your family member or close other, it might be useful to write down your responses to the following in your workbook and to have them available for a future hospitalisation:
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List the health conditions that require attention, but may not be the reason for the person's hospitalisation.
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List 3-4 strategies that you could suggest to hospital staff that can avoid exacerbating health problems, such as seizures.
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Explain each strategy, as though to a nurse or doctor.
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List the personal care needs of your family member or close other, such as in eating or toileting.
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Describe how you support them in these areas of basic or personal care.
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Explain the role you would like to have in the person's health and personal care.