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Polio-Related Disability Snapshot

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Polio-Related Disability Snapshot

SGP KP Publishing

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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

Table of Contents – 2

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SGP KP Publishing – Polio-Related Disability Snapshot

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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SGP KP Publishing – Polio-Related Disability Snapshot

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.

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:

  1. prior paralytic poliomyelitis with evidence of motor neuron loss
  2. a period of partial or complete functional recovery after acute paralytic poliomyelitis
  3. slowly progressive and persistent new muscle weakness or decreased endurance, with or without generalised fatigue, muscle atrophy, or muscle and joint pain
  4. symptoms that persist for at least a year, and
  5. 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.

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.

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 may 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?”.

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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SGP KP Publishing – Polio-Related Disability Snapshot

  • 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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Prader-Willi syndrome Snapshot

SGP KP Publishing

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Table of Contents

1 What is Prader-Willi syndrome? …………………………………………………………………………….. 4 2 Common characteristics and impacts of Prader-Willi syndrome …………………………….. 5 3 Myths and misunderstandings ………………………………………………………………………………. 9 4 Common barriers to social and economic participation ……………………………………….. 10 5 What is the role of the family in providing support? ……………………………………………… 11 6 How can I tailor a meeting to suit a person with PWS? …………………………………………. 12 7 Helpful links for further information …………………………………………………………………….. 14 8 Representative bodies consulted when developing this Snapshot ……………………….. 15

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SGP KP Publishing – Prader-Willi syndrome Snapshot

This is a snapshot and is not designed to be a comprehensive guide. It provides general information about Prader-Willi syndrome (PWS) for NDIA staff and Partners. It is not to be distributed externally.

Each person with PWS is an individual but there is a commonality of impairment. Beyond that, each has their own additional needs, preferences and experiences that will impact on the planning process.

In developing this resource, we consulted with Prader-Willi Syndrome Australia.

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1 What is Prader-Willi syndrome?

Prader-Willi syndrome (PWS) is a rare neuro-behavioural genetic disorder. It is a very complex, multistage disorder that permanently affects multiple systems in the body. PWS presents at birth and continues, with significant intensity, throughout life. It occurs equally in males and females.

People with PWS have a flaw in the part of the brain called the hypothalamus. This part of the brain is an important supervisory centre and hormone regulator. The hypothalamus when fully functioning, registers feelings of hunger and satiety (fullness). For individuals with PWS this does not occur and individuals with PWS never feel full. There is a constant pre-occupation with food accompanied by an overwhelming physiological drive to eat.

Currently there is no cure for PWS, although advances are being made through treatment with Growth Hormone. Most people with PWS require specialist support and a supervised diet for life. Generally, PWS is not inherited (except in 5% of cases) and can occur in any family. A suspected diagnosis of PWS is usually made by a physician based on clinical symptoms and a genetic test confirms a diagnosis of PWS. It is estimated that the incidence of PWS varies from 1:15,000 to 1:25,000 births.

Common characteristics and impacts of Prader-Willi syndrome

PWS significantly impacts the behaviour, mental, emotional and physical status of the people who have it. People with PWS have cognitive, social, emotional, behavioural and learning impairments, which limit their ability to manage daily living tasks, to work or participate in the community.

In Australia, life expectancy for people with PWS is much lower than the rest of the population, with life expectancy less than 38 years of age. Morbid obesity results from overeating and can lead to a range of health complications and even death.

Compulsive eating and obsession with food usually begins in childhood. Consistent food security management is essential to maintain a healthy weight. Without supervision for the entirety of their life, individuals may die prematurely due to complications of obesity and other related co-morbidities. People with PWS are also at higher risk of diabetes, sleep apnoea, choking, and stomach rupture. The reduced vomiting reflex means that the ingestion of uncooked, spoilt or toxic substances can cause serious gastric complications.

There are however, environmental modifications and management strategies that can help reduce or manage some of the symptoms caused by PWS and improve a person’s quality of life.

Food control relates to the management of access to food and beverages for a person with PWS. This may extend to locking kitchens and food storage areas. These are considered to be restrictive practices and need careful consideration taking into account the capacity of the person with PWS to make specific decisions about their eating.

Properly managed food security practices can significantly reduce the risk of harm due to overeating and can improve the quality of life and the life expectancy of a person with PWS.

For a person with PWS, access to money means access to food. It is important to make sure that there is sufficient support and supervision around money and budgeting. Someone with PWS doesn’t see taking other people’s money as ‘stealing’ but as an act of survival.

Although everyone with PWS is different, there are many characteristics that exist, to a greater or lesser degree, including:

Common Impairment Functional Impact
Chronic feeling of hunger due to hyperphagia - lack of satiety. * Constant food seeking behaviour.
  • Unusual metabolism and BMI: low-calorie diet required.
  • Obesity and related comorbidity. | | Morbid obesity and related comorbidity caused by excessive food seeking behaviour. | * Lifelong calorie restriction and exercise required. |

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SGP KP Publishing — Prader-Willi syndrome Snapshot

Common Impairment Functional Impact
Genetic malfunction of central nervous system, endocrine gland and hypothalamus. - Difficulty to live an ordinary life due to mobility and energy limitations.

  • Increased ill health over time, including diabetes, sleep apnoea and incontinence.

  • Unable to monitor their own health and wellbeing accurately.

  • High pain threshold; body temperature abnormalities - altered temperature sensitivity.

  • Overestimate their own ability or state of health. | | Global development delay:

  • Learning/intellectual disabilities (borderline to moderate). Note: For the person with PWS, IQ is not an accurate guide for the actual function and comprehension level of the person. The person with PWS will have ‘pockets’ of more limited capability, with a significant adverse impact on day to day functioning. | - Do not perform as well in daily life as expected from their IQ.

  • Risk to welfare due to impulsivity, very poor decision making and a limited ability to perceive consequences.

  • Low receptive and expressive language skills.

  • Problems with abstract thinking and concepts.

  • Difficulty understanding that what happens in one situation may not happen in another.

  • Low short-term memory and auditory processing skills makes it harder to learn at school or work.

  • Rigid reliance on routines, lack of motivation, poor judgement, friction with others, lack of concentration, reduced ability to learn, limited ability to take responsibility or behave responsibly.

  • Home environment may be very unsafe due to hoarding, food stealing, poor environmental hygiene levels. | | Deficits in executive brain function; not good at planning and organising and poor concept of time. | - Challenges with sequential processing, initiating or effectively completing tasks from start to finish and switching from one activity to another.

  • Poor at assessing reality and recognising consequences.

  • Interpersonal friction may be caused due to excessive risk taking, egocentric behaviour, lack of empathy and decision-making skills.

Tendency to alienate others. | | Poor emotional and social development. | - |

Common Impairment

Chronic behaviour disturbance; centrally driven maladaptive behaviours, characterised by constant high anxiety and extreme stress sensitivity. Higher risk of developing mental health problems in adolescence and early adulthood, including depression, bipolar disorder and psychosis. Atypical physical features (especially if no growth hormone treatment):

  • Short stature
  • Small hands and feet. Very low muscle tone (Hypotonia). Delayed or incomplete puberty (Hypogonadism). Sleep disturbance.

Functional Impact

Difficulty maintaining friendships or resolving conflicts and expressing feelings appropriately, particularly when anxious. Inappropriate behaviour in public due to failure to understand appropriate social conduct. Challenging behaviours tend to escalate with age. Complex behavioural problems, for example, argumentative, aggressive and destructive actions, over-active, temper tantrums, obsessive-compulsive behaviour, stubbornness, rigidity, stealing, and lying (especially related to food), lying in a plausible way and exaggerating (confabulation), manipulation of responsible adults. Psychosocial impairments including; lack of motivation poor self-care low volition (deciding and committing to a course of action) lack of judgement irritability. Often unable to participate with peers in energetic activities. Self-esteem and self-image often affected. Often impacts how others react to them (adults treated as children; older children treated as younger children). Speech difficulties (Dyspraxia); require alternative communication techniques. Delayed developmental milestones. Prone to tripping and falls. Reduced ability and desire to engage in exercise. Reduced vomit reflex. Complications due to severe constipation. Gait and mobility difficulties. Social difficulties; hormone replacement program required. High risk of obstructive sleep apnoea and daytime sleepiness.

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SGP KP Publishing — Prader-Willi syndrome Snapshot

Common Impairment Functional Impact
Skin picking - open sores and bruises can lead to life-threatening infection. * Affects day-to-day performance and ability to participate.
  • Requires consistent monitoring and management (for example, using CPAP machine).
  • Easily becomes a habit due to the disabling effects of high anxiety and sensory stimulation.
  • Scratching and picking at the skin, sometimes triggered by insect bites or other skin lesions which leads to skin infections and scarring. | | Communication difficulties | * Articulation difficulties - Fluency issues or stuttering.
  • Significant language delay/disorder.
  • Most people with PWS have receptive or expressive language difficulties or both.
  • Impaired pragmatic language skills.
  • The veracity of their language is often further diminished due to fictitious disorder/confabulation and perseveration. |

Every person with Prader-Willi syndrome needs specialist support and treatment. The complexities of PWS require interventions from a variety of providers to maintain daily functioning and wellbeing including behavioural support, medical specialists and allied health professionals throughout the person’s life.

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Myths and misunderstandings

Myth Fact
People with PWS tell lies. Yes, but no; it is officially called ‘confabulation’. To the outside world, this seems like lying. But it is a direct result of their disability. People with PWS can form a belief and can’t be shaken from it, even in the face of evidence to the contrary. Arguments will only result. Authority figures should always corroborate information before making important decisions, rather than relying on the word of the person with PWS.
Some people with PWS can speak well, therefore, they are competent in all aspects of their lives. All people with PWS have planning and organisational deficits that mean they cannot safely or reliably put good ideas into completed actions (for example, they may not necessarily be able to maintain their own hygiene, or that of their environment, without support). The inability to control impulses or understand potential consequences often endangers their own welfare.
People with PWS are generally physically capable, therefore they don’t need 24/7 support. The cognitive impairments experienced by someone with PWS mean that they are usually unable to enact the requirements of daily life without supports. They need even greater support for community and economic participation due to a lack of volition and self-management capabilities and the risk of impulsive behaviours. They need prompting at minimum and much more proactive and detailed support where their capability declines. It is recognised internationally that people with PWS require a high level of support due to the broad variety of disabling characteristics in one person.
Once the capacity of a person with PWS has been built, the supports can be reduced. This has not been demonstrated. People with PWS find it extremely difficult to extrapolate from one situation to another. They have ongoing, genetic impairments in executive function, satiety and regulating anxiety and emotions. The risk of early death from overeating does not ever reduce and supports must always be in place to manage food (and money) security.

4 Common barriers to social and economic participation

People with PWS have the same aspirations as everyone else; to be in a loving relationship, to have friends, to participate in community life and work and to feel included as full citizens. However, like many people with disability, people with PWS encounter multiple barriers to social, economic and civic participation. These barriers include discriminatory attitudes, perceptions and misconceptions as well as environmental and social barriers.

  • Community attitudes
    • Lack of community awareness and understanding about the complexities of PWS resulting in stigma and exclusion.
  • Difficulty accessing services in the mainstream community
    • Limited community resources and venues to support people with PWS to be included in the community such as sporting clubs and public spaces.
    • Reluctance on the part of organisations and facility staff to seek training and explore ways to support people with PWS who want to access mainstream activities and facilities.
    • Inadequate access to mental health services where there has been a tendency to attribute difficult behaviour to the intellectual disability, rather than an emerging mental illness.
  • Education
    • Reluctance on the part of schools to fund professional development, PWS training and explore ways to support people with PWS so they can access and participate in the full school curriculum.
  • Difficulty accessing and maintaining employment.
  • Housing
    • Lack of housing options that provide safe and supported accommodation that meets the specific needs of the person with PWS including substantive support, food security and adequate staffing capabilities.
  • Transport
    • Lack of flexible transport arrangements and supports to allow management of unsupervised access to food and challenging behaviours.
    • While people with PWS are able to physically use public transport, it may not be an option all the time, for reasons of safety for the person with PWS and those around them.

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5 What is the role of the family in providing support?

Families provide different levels of support to the person with PWS depending on the individual family circumstances. Usually they play an active role in the areas of management of food security, dietary and exercise management, supporting daily living tasks, medical care, money management and advocating on their behalf. This is often beyond the age that you would generally expect a parent or family member to provide support.

Parents of children with PWS consistently report higher levels of stress than families of other complex disabilities and have higher incidence of family relationship problems. This is often due to the 24/7 vigilance required to manage the hyperphagia and other behavioural problems such as aggression.

Even if the person with PWS transitions to supported accommodation the family often chooses to remain involved to advocate for their family member. Where possible, families may choose to also have a role in attending medical and allied health appointments. But due to the extensive list of medical and allied health appointments, parents and family members may find this difficult to manage.

Consideration should be given to a holistic approach when reviewing informal supports to maintain sustainability and to safeguard against disintegration of the family unit.

6 How can I tailor a meeting to suit a person with PWS?

It is important to be aware of the characteristics of PWS before you meet someone with PWS. There is a high risk of underestimating the difficulties experienced by someone with PWS and this can lead to inadequate support and a decline in the participant’s health, safety and wellbeing.

People with disability are presumed to have capacity to make decisions that affect their lives. Every effort must be made to enable the leadership and participation of the person with PWS in meetings. It is a good idea to make sure that an appropriate support person is included in the meeting to confirm facts and provide additional information. People with PWS are prone to confabulation and you should attempt to corroborate information with family/carers. It is also important to give family/carers an opportunity to talk about their role in providing informal supports and whether the NDIS can help them to take a break.

Consider what will support a successful planning meeting. Prior to any meetings it may be helpful to consider the following:

Before the meeting:

  • Provide any written material in Easy English or other languages on request prior to the meeting.
  • Provide as much information about the purpose of the meeting in advance so the person with PWS and their support person can prepare their answers thus reducing the stress level at the actual meeting.
  • Allow more time for the meeting, as the person may want to revisit some of the discussion to understand and assimilate the information and alleviate their anxiety.
  • People with PWS frequently have a minimal sense of time. So, realistic planning for a day, week, month, year or the future will be difficult for them to conceive of or act upon, despite the words they say to you.
  • If a change of accommodation is planned, see the Prader-Willi Syndrome Australia Residential guide.
  • The person may have some mobility difficulties (for example, low muscle tone or obesity), tire easily and need ready access to a toilet.

Communication during the meeting:

  • Be aware that the person with PWS may be able to speak to you clearly, with good expressive language. However, they have a relatively poor level of comprehension and typically:
  • May lie and exaggerate about themselves and their circumstances (confabulation), putting themselves at risk
  • Will unreliably report on their state of health
  • Have poor short-term memory and auditory processing difficulties and find it hard to take in lots of information, especially in conversation
  • Can think through things slowly, ask questions and understand small amounts of information at a time.
  • Speak in short sentences; allow enough time for the person to think and respond. Avoid jargon, slang or acronyms.
  • Look for body cues that the participant is not telling the truth such as avoiding eye contact more than previously.
  • Address the questions to the person with PWS rather than the support person. The person with PWS may elect to request assistance from their support person.
  • Speak respectfully to the person with PWS in an age appropriate fashion.
  • Rephrase or repeat the question if you or the support person suspect they haven’t understood the question.
  • Be patient, as the person with PWS will need time to process the response.
  • People with PWS tend to be literal thinkers. Do not make any comments that may be interpreted literally, or promises that you cannot keep.
  • People with PWS often give answers that attempt to please others. Use a variety of questioning techniques to try to get the participant’s own views.
  • Information supplied by the person with PWS which will be used to make decisions may need to be corroborated by another party. Ensure you apply reasonable and necessary decision making to determine any appropriate funded supports to be included in the participants plan.

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Helpful links for further information

  • Prader-Willi Syndrome Association of Australia
  • Guide for NDIA Technical Advisory Branch (for staff members who are providing advice during planning or reviewing a plan for a person with PWS)
  • Clinicians and Allied Health Professionals advice
  • Best Practice Guidelines for Residential Care
  • Prader-Willi Syndrome: A Primer for Psychiatrists
  • Prader-Willi Syndrome Association UK
  • Prader-Willi Syndrome Association (USA)
  • International Prader-Willi Syndrome Organisation

8 Representative bodies consulted when developing this Snapshot

In developing this resource, the NDIA consulted with the Disability Advocacy Network Australia who worked with Prader-Willi Syndrome Australia to develop this snapshot.

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Psychosocial Disability Snapshot

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Table of Contents

1 Peak body consulted ……………………………………………………………………………………………..4 2 What is psychosocial disability? …………………………………………………………………………….5 3 How is psychosocial disability identified? ………………………………………………………………6 4 Language and terminology …………………………………………………………………………………….7 5 Enabling social and economic participation ……………………………………………………………8 6 Families and carers ………………………………………………………………………………………………10 7 How can I tailor a meeting to suit a participant with psychosocial disability? ……….. 11 8 What people with psychosocial disability want you to remember …………………………. 12 9 Helpful links ………………………………………………………………………………………………………… 13

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SGP KP Publishing – Psychosocial Disability Snapshot

This Disability Snapshot provides general information about psychosocial disability to assist you in communicating effectively and supporting participants to develop their goals. Each person is an individual with their own needs, preferences and experiences. This information has been prepared for NDIA staff and partners and is not intended for external distribution.

Peak body consulted – 3 Page 251 of 308

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SGP KP Publishing – Psychosocial Disability Snapshot

Peak body consulted

In developing this resource we consulted with Community Mental Health Australia (CMHA) and Mental Health Coordinating Council of NSW (MHCC).

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2 What is psychosocial disability?

Psychosocial disability refers to the social and economic consequences related to mental health conditions. It is used to describe the challenges, or limitations, a person experiences in life that are related to mental health conditions. This may include challenges or limitations in their capacity to:

  • have a good social network including friends and a family of their own
  • participate fully in life
  • experience full physical health
  • manage the practical, social and emotional aspects of their lives
  • engage in education, training, cultural activities and economic participation
  • achieve their goals and aspirations.

The impact of psychosocial disability can vary over time because of the difficulties people experience with mental health conditions and many other factors in the individual’s life. Not everyone living with mental health conditions will experience a significant psychosocial disability and individuals will experience psychosocial disability differently.

In Australia, people with a psychosocial disability make up a significant proportion of Australia’s most disadvantaged population. People with a mental illness (21.7%) are the second largest group receiving the Disability Support Pension.

People with psychosocial disability may also have lived and living experience related to trauma, suicidal ideation, and substance use. The complexity of this means you should adopt a whole-of-person approach.

How is psychosocial disability identified?

A person may be diagnosed with a mental health condition, but psychosocial disability is not a diagnosis. Psychosocial disability is identified by the impacts of, or impairment resulting from, the person’s mental health conditions.

A health professional such as a GP, psychiatrist or allied health professional may identify psychosocial disability through assessment or testing.

Impairment resulting from psychosocial disability can be episodic or fluctuating. To understand the functional impact and psychosocial disability for an individual, it can be helpful for an allied health professional (for example occupational therapist, psychologist, speech therapist, social worker) to provide an overall assessment of the person’s functioning.

It is important that the assessment considers the impacts in relation to:

  • mobility
  • communication
  • social interaction
  • learning
  • self-care
  • decision-making.

Psychosocial disabilities often include cognitive difficulties which may affect function in the areas of:

  • memory
  • communication
  • organising and planning skills
  • social interactions
  • visual interpretation.

The symptoms of a mental health condition may be of an episodic nature and vary in intensity and need for support. How this impacts on psychosocial disability may mean that there will be times when a person may experience significant limitations; while at other times they may be able to go about their daily life without experiencing the same challenges.

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4 Language and terminology

When talking with or about a person with a psychosocial disability, use ‘person first’ language. For example, saying ‘person living with a psychosocial disability’ rather than ‘disabled person’. People with mental health conditions usually prefer not to be defined by them. Using strength-based language, rather than focusing on a person’s limitations, maximises a person’s sense of self, and independence. The term ‘recovery’ is used widely throughout the mental health service system and can have different meanings for different professionals/disciplines and people accessing the services. The NDIA defines recovery as achieving an optimal state of personal, social and emotional wellbeing, as defined by each individual, whilst living with or recovering from a mental health condition. Recovery is an individual and unique process. It is defined by the person and driven by their needs and preferences. Recovery involves:

  • having hope
  • being motivated
  • feeling optimistic about the future
  • having the skills and strategies to manage the challenges the participant may experience
  • ensuring that services are delivered using a trauma-informed recovery-oriented practice approach. It is important to use language that reflects the recovery-based approach. You can find more information on recovery-orientated language in the Helpful Links section and in the Practice Guide – Psychosocial Disability.

5 Enabling social and economic participation

Some of the consequences of psychosocial disability may include:

  • poverty
  • discrimination
  • unemployment
  • poor educational outcomes
  • poor housing.

The relationship between these consequences and the underlying mental health condition can be interconnected and two-way. For example, loss of connection with family, friends and community can worsen a participant’s mental health. It is important to focus on building and maintaining social connection and relationships.

The earlier a person connects with services and supports, the better. The episodic nature of a mental health condition may vary on a day-to-day basis or over the person’s life span, and their plan needs to be flexible enough to respond effectively.

A self-directed, strengths-based, trauma-informed, recovery-oriented approach to a person’s mental health and well-being is highly effective. This may mean working with the person to help them identify some safe activities to start such as building their social networks or getting back into work. Capacity building supports are important to this approach as well as core and assistive technology supports. Adopting a strengths-based approach in supporting the participant to identify their goals, objectives and aspirations is vital to build rapport and develop independence. In using a strengths-based recovery approach, you will focus on the participant’s talents, positive attributes and potential and identify how that will help them to achieve their goals.

Capacity building supports:

  • A Recovery Coach support can provide assistance in building capacity and resilience in people with psychosocial disability and support them to live a more fulfilling life. Recovery coaches work with participants, families, carers, and other services to get the best outcomes from NDIS supports.
  • A support coordinator can be effective in maintaining continuity of supports and allows for supports to be increased quickly and/or accessed at short notice as needed. Support coordinators can also ensure appropriate support is available around transitions from hospital to community, and that an ongoing relationship is there to facilitate engagement in social, economic and community life.
  • An occupational therapist with specialist knowledge in mental health can assess functional capacity and provide support in maintaining a job, volunteer role, study, and/or social networks.
  • An exercise physiologist can provide an accessible and achievable exercise program to support a person’s mental health and build community networks.

Core supports:

  • A functional home environment can improve mental health. Support workers can assist with daily living activities in the home like meal preparation and cleaning.
  • Support workers can also assist with and encourage participation in an exercise plan given by an exercise physiologist and promote self-care with regards to personal care and physical health.
  • Access to community groups can help facilitate social inclusion and build relationships.

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Assistive Technology (AT):

  • AT can provide both functional and emotional support for example by assisting individuals to learn new information and build organisation, concentration and planning skills.

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6 Families and carers

Family, friends, carers and kinship groups play an important role in a person’s recovery. Mental health carers can include a parent caring for a child, an adult caring for a partner, friend, parent, or sibling, or a child caring for a parent. Due to the episodic nature of mental health conditions, people living with psychosocial disability may require regular on-call care. Family members often provide care for many years, often either in their own home or the home of the person living with psychosocial disability.

Other informal supporters are often unexpectedly called upon to play a role in mental health care. They may have found themselves in this carer role because they see it as part of their relationship with the person with psychosocial disability. Nevertheless, they may not think of themselves as a ‘carer’.

It is important to consider whether the level of care provided by family members, carers or informal supports is sustainable. It may be reasonable and necessary to include core supports and respite to prevent carer burnout. To support carers and family members in this role, provide them with relevant resources and information.

Refer to the Helpful Links section for more information.

How can I tailor a meeting to suit a participant with psychosocial disability?

Many people who live with psychosocial disability may have experienced trauma in their life and can become distressed if they do not feel safe. To facilitate a sense of safety make sure you:

  • Allow enough notice for the person to prepare for meetings (ideally four weeks) and be clear about what ‘prepared’ means.
  • Consider the environment and ask the person what helps them feel safe in a room. Let them know the choices they have, such as having the meeting in a familiar place, having a support person with them, and whether the gender of the support person and the NDIA representative is important. A support person may need to be invited to attend as they can be particularly important to help convey a person’s needs.
  • Provide easy access to exits and offer breaks or follow-up meetings.
  • Be honest and clear about what you can and can’t do. Set boundaries and expectations early and allow the person to set their own boundaries if possible.
  • Maintain confidentiality and be clear about what information will be kept and what it will be used for.
  • Provide information about your recommendations and why they are relevant, even if it seems obvious.
  • Ensure the participant understands what choice and control means in the conversation. People may feel very disempowered by those they see as ‘authority figures’ and may feel intimidated. Encourage the person to take part in the process, allow them space and time to speak up. An example question could be: “Is this the ideal outcome today from your point of view? How do you think we could achieve this?”
  • Listen non-judgmentally and collaborate with the person to clarify their need. Ask the person what they find important and don’t make assumptions. Use paraphrasing and clarifying questions to understand their wants and needs.
  • Use the Reimagine Workbook (see the Helpful Links section) which has a tool to use in collaboration with the participant.

8 What people with psychosocial disability want you

to remember

  • People living with psychosocial disability have first-hand knowledge of what they experience.
  • Involving a support person in a planning meeting can help the participant feel safer and more confident to ask for what they need and don’t want.
  • The road to recovery varies from person to person.
  • People with psychosocial disability often experience stigma and discrimination which can be highly distressing.
  • Psychosocial disability is not a visible disability, but the impact on a person’s life is very real.
  • Take the concerns of the person living with psychosocial disability seriously.
  • Social inclusion and community connection are significant to recovery.

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  • Reimagine
  • Reimagine my life Workbook
  • Mental Health Carers Australia
  • Recovery Oriented Language Guide
  • Unravelling Psychosocial Disability Booklet
  • Practice Guide – Psychosocial Disability
  • Guide - Conversation style guide

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Schizophrenia Disability Snapshot

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Table of Contents

1 Peak body consulted ……………………………………………………………………………………………..4 2 What is schizophrenia? ………………………………………………………………………………………….5 3 Schizophrenia is characterised by symptoms that are grouped as positive, negative and cognitive: ………………………………………………………………………………………………………………6 4 How is schizophrenia diagnosed? ………………………………………………………………………….7 5 Language and terminology …………………………………………………………………………………….8 6 Enabling social and economic participation ……………………………………………………………9 7 How can I tailor a meeting to suit a participant with schizophrenia?………………………10 8 Helpful links …………………………………………………………………………………………………………11

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This Disability Snapshot provides general information about schizophrenia. It will assist you in communicating effectively and supporting the participant in developing their goals in a planning meeting. Each person is an individual and will have their own needs, preferences and experiences that will impact on the planning process. This information has been prepared for NDIA staff and partners and is not intended for external distribution.

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Peak body consulted

In developing this resource we consulted with Mental Health Australia.

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2 What is schizophrenia?

Schizophrenia is an established medical disorder that is common worldwide. Up to 1 in 100 people will experience schizophrenia.

Schizophrenia is characterised by symptoms that are grouped as positive, negative and cognitive:

  • positive symptoms are intense episodes of psychosis, in which a person may experience auditory and/or sensory hallucinations and delusional beliefs, including paranoia. Psychosis can make it difficult for a person to distinguish between what is real and what isn’t real
  • negative symptoms are often characterised by reduced expression and/or reduced motivation and/or a reduced capacity to function in everyday life
  • cognitive symptoms generally relate to attention, memory, verbal skills and may include longer periods of slowed or confused thinking.

Antipsychotic medicines are the main form of treatment for schizophrenia.

It is important to note that people experiencing schizophrenia do not have a split or multiple personalities and they are not inherently more prone to violence. In fact they are more likely to become a victim of violence.

4 How is schizophrenia diagnosed?

Schizophrenia may take time to diagnose. A person will only receive a confirmed diagnosis of schizophrenia after experiencing one month of psychotic symptoms and six months of reduced functioning.

A GP or other medical professional might make the initial assessment, and would then refer the person to a specialist, usually a psychiatrist for diagnosis. The specialist might then make a working diagnosis of schizophrenia, so that treatment can begin without delay.

There is no known biological marker for schizophrenia. Schizophrenia is primarily a clinical diagnosis, it is diagnosed by identifying signs and symptoms and monitoring how the symptoms develop over time.

5 Language and terminology

People living with mental illness don’t like to be defined by their diagnosis, to be stigmatised or have assumptions made about them. Therefore phrases such as ‘schizophrenia sufferer’ or ‘he’s a psychotic’ are inappropriate.

Instead say:

  • she lives with schizophrenia
  • she has had an experience of schizophrenia
  • he has had an experience of psychosis
  • person living with schizophrenia
  • the person has schizophrenia.

6 Enabling social and economic participation

Support to participate in the community and in work can help prevent social isolation and promote recovery and wellness for people living with schizophrenia. It is important to explore how a person with schizophrenia can be supported to participate in activities, education and employment, taking into consideration their interests and aspirations as an individual.

NDIS supports can assist participants build life skills, capabilities and greater independence. This may include being supported through a vocational ‘discovery’ process to explore their strengths and interests in the context of work, particularly for young people transitioning from school into employment.

Early access to pre-vocational training and employment opportunities can improve long-term outcomes in both employment and education. Peer support from other people living with schizophrenia can also play a key role in improving participation in work and the community.

Volunteering can also be a first step in building confidence and exploring the person’s interests and strengths.

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How can I tailor a meeting to suit a participant with schizophrenia?

People experiencing schizophrenia are above all, individuals the same as you and me. No two people with schizophrenia are alike, they will experience schizophrenia in different ways and their needs will vary as much as anyone else. They enjoy family, friends, have a sense of humour, sporting interests and like to participate in all aspects of the community.

Many people living with schizophrenia are indistinguishable from people without the condition and they may not require any special considerations or treatment.

However, a person experiencing schizophrenia may be affected by slowed or confused thinking, or reduced expression, motivation and functioning. They may also experience distressing side-effects of their medication. This may mean the person might require more time than usual to understand what is being said and to compose or express their thoughts.

When meeting with a person with schizophrenia, provide a quiet, respectful and calm environment. Allow the person the time they need. Avoid the temptation to finish their sentences or rush them. Do not assume you know what they need or want.

A person experiencing active psychotic symptoms, delusional beliefs and/or sensory hallucinations may find it very difficult to concentrate and to trust the situation they are in. They may feel irritated, agitated or frightened. Remain calm, show respect and compassion and focus on how they feel, rather than the details of their delusions or hallucinations.

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  • Spotlight on Schizophrenia — SANE Australia website.

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