FOI 24/25-0367 DOCUMENT 18
Polio-Related Disability Snapshot SGP KP Publishing
Exported on 2024-10-18 03:13:32
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FOI 24/25-0367 SGP KP Publishing – Polio-Related Disability Snapshot
Table of Contents
1 Peak body consulted …………………………………………………………………………………………….. 4
2 What is polio-related disability? …………………………………………………………………………….. 5
3 How are Polio, LEoP and PPS diagnosed? …………………………………………………………….. 6
4 Language and terminology ……………………………………………………………………………………. 7
5 Enabling social and economic participation …………………………………………………………… 8
6 Families and carers ……………………………………………………………………………………………….. 9
7 How can I tailor a meeting to suit a participant with PPS and LEoP? …………………….. 10
8 What people with polio-related disability want you to remember …………………………… 11
9 Helpful links ………………………………………………………………………………………………………… 12
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This Disability Snapshot is about polio-related disability and will assist you in supporting the participant and communicating effectively. This information is a general guide only – each person is an individual and will have their own needs, preferences and experiences. This information has been prepared for NDIA staff and partners and is not intended for external distribution.
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1 Peak body consulted
In developing this resource, we consulted with Polio Australia.
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2 What is polio-related disability?
Poliomyelitis (polio) is a highly infectious disease caused by a virus. It affects the nervous system and can cause complete paralysis. Polio-related disability affects those who have survived polio, knowingly or unknowingly. Many polio survivors have lived with neuromuscular disability since their polio infection, which usually occurs in early childhood. Other polio survivors develop disability later in life, which is known as Late Effects of Polio (LEoP). Some polio survivors will go on to have a specific diagnosis of Post-Polio Syndrome (PPS) from a specialist doctor.
LEoP is the general term describing the varied and progressive condition experienced by those with a history of polio. The symptoms of the condition develop between one to five decades after infection, and usually include:
new or increasing muscle weakness affecting quality of life or safety fatigue of muscles of the limbs or trunk, and/or central (exhaustive) fatigue pain in muscles and/or joints of the limbs or trunk difficulty sleeping other symptoms, including breathing problems, speech and swallowing issues, and poor thermoregulation.
The majority of polio survivors that access the NDIS are likely to come from migrant or refugee populations where polio is not eradicated in their home country. Many polio survivors in Australia are already over the age of 65 and may not be eligible for the NDIS.
Polio survivors mostly display physical disabilities which vary widely from person to person. Many polio survivors need long-term limb bracing and use assistive technology to increase their function.
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3 How are Polio, LEoP and PPS diagnosed?
Polio is a virus that can only be diagnosed at the time of infection. Some people don’t know they have had polio, and it can be diagnosed later in life based on the person’s history and the likelihood of a previous infection.
LEoP is an informal diagnosis that accounts for a person’s current symptoms and abilities in context of their polio history. Examples include:
back pain from scoliosis or limping difficulty maintaining a strong voice during conversations being exhausted from performing household tasks like doing laundry.
A General Practitioner can diagnose these symptoms and develop a plan to support the polio survivor. Often, LEoP is only recognised after many other possible illnesses and conditions have been ruled out. Getting a diagnosis can be an exhausting and traumatic process.
PPS is a specific diagnosis based on five criteria, made by a specialist doctor:
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prior paralytic poliomyelitis with evidence of motor neuron loss
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a period of partial or complete functional recovery after acute paralytic poliomyelitis
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slowly progressive and persistent new muscle weakness or decreased endurance, with or without generalised fatigue, muscle atrophy, or muscle and joint pain
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symptoms that persist for at least a year, and
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exclusion of other neuromuscular, medical, and skeletal abnormalities as causes of symptoms.
Not all polio survivors who develop LEoP go on to be diagnosed with PPS, but those who are diagnosed with PPS have most certainly been experiencing LEoP.
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4 Language and terminology
People who survived polio are commonly called polio survivors or survivors. Some survivors refer to themselves as “polios”, however this term is used by the polio community and its use by others is not encouraged.
When talking about function and activity, you should prioritise managing LEoP, rather than attempting to find solutions. Ask questions like “how could you make things easier to manage?” or “if you changed a few things, do you think you might be able to …?”.
Using this type of language, the polio survivor can focus on what they can achieve and avoid unrealistic goals that may not be achieved with their condition.
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5 Enabling social and economic participation
Support to enable social and economic participation for polio survivors varies. This can depend on the person’s degree of physical difficulty and any compounding cultural or language barriers. Required supports may include:
access to culturally-relevant services and supports collaboration with local cultural services regarding accessibility issues referral to allied health professionals (especially those trained in post-polio management) assistance and/or capacity building in using public transport, or transport funding in certain situations where public transport is not suitable because of fatigue or low mobility vehicle modifications to increase access, both as a driver and a passenger workplace assessment and appropriate modifications.
Being able to participate in social and community engagement are also important for polio survivors to increase daily functioning and to promote good mental health.
You should respect the polio survivor’s own ideas about how to achieve their goals, but keep in mind that many polio survivors might not know how the best way to work within their level of function and limit fatigue and muscle weakness. Many polio survivors may be overdoing activity, leading to a further loss in function over time.
For polio survivors from a migrant background, it can be difficult to access employment because of marginalisation due to physical disability, language barriers, and cultural differences. They may try to hide their disability out of fear of jeopardising their residency in Australia. They may also work in manual labour jobs, which are more likely to make their LEoP conditions worse.
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6 Families and carers
Informal support from family members can range from full time carers to assistance with specific tasks. With the polio survivor’s permission, it may be appropriate to give the carer or family member information about the Late Effects of Polio, support services available and direct contacts who are able to offer guidance. This may be useful to understand the reasons for the polio survivor’s functional limitations.
Links to resources, contacts and further information can be found in the Helpful Links section.
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7 How can I tailor a meeting to suit a participant with PPS and LEoP?
When organising a meeting you should consider fatigue and mobility issues. You should contact the participant when booking the meeting to make sure the time suits their routine and any fatigue they make experience at different times of the day. Some polio survivors may appreciate the option of a phone or online meeting.
For face-to-face meetings, make sure:
the meeting room is close to the building’s entrance accessible parking is available, and the room is at a moderate temperature as polio survivors can experience cold intolerance.
Before the meeting, take some time to develop an understanding about LEoP and PPS. Don’t make assumptions, take time and actively listen to understand the history of the person – both physical and psychological.
It is common for polio survivors to give an impression of more independence than they actually experience. Use open-ended questions to encourage more detailed answers. For example, ask: “How do you manage your shopping?”, rather than “Are you able to shop without help?”.
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8 What people with polio-related disability want you to remember
A polio survivor’s disability is physical – there is usually no intellectual or cognitive component (except where fatigue impacts on memory and concentration). Their condition often progresses due to neurological breakdown. Health professionals can often give generic advice on exercise and activity, and recommendations must be customised to the individual. Survivors have often overcome stigma and trauma, and may conceal their disability. Polio survivors are resilient and determined due to overcoming stigma and limitations. Keeping their independence is often an important goal. Their mental health can deteriorate if LEoP/PPS symptoms return, unpleasant childhood memories from infection surface, their independence reduces, or they feel socially isolated. Polio and LEoP/PPS affects each person differently – talk to the person directly about their own experience, functional capacity and goals.
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9 Helpful links
Polio Australia Fact sheets and guides for polio survivors Fact sheets and guides for professionals Find a local professional who is familiar with LEoP/PPS State and territory based Polio organisations
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