FOI 24/25-0999 DOCUMENT 18
Intellectual Disability Snapshot
This Disability Snapshot provides general information about intellectual disability to assist you in communicating effectively and supporting the participant to develop 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.
Peak body consulted
In developing this resource we consulted with Inclusion Australia.
What is intellectual disability?
Intellectual disability usually begins before the age of 18 and affects people their whole life. Intellectual disability does not define who a person is, and each individual person has their own personality, interests, skills and needs1.
A person with intellectual disability experiences significant limitations2 in their intellectual functioning. This includes:
reasoning planning problem solving understanding complex ideas.
Intellectual disability also affects adaptive behaviours such as:
academic skills - for example, language, reading, writing and arithmetic social skills - for example, interpersonal skills, communication, self-esteem,
gullibility, and social problem solving practical skills - for example, personal care, use of money, safety, health care,
domestic tasks, and travel.
How is intellectual disability diagnosed?
Intellectual disability is diagnosed by a psychologist accredited in conducting standardised assessments of intelligence and adaptive behaviour.
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How many people have intellectual disability?
People with intellectual disability are one of the largest primary disability groups in the NDIS.
11% of NDIS participants at 30 December 2019 had an intellectual disability3. Approximately 45% of people with intellectual disability will have another significant
disability, for example, autism, physical, psychosocial or sensory disability4.
What causes intellectual disability?
Intellectual disability can occur before, at, or after birth. There are a range of causes of intellectual disability, including:
Prenatal – for example, chromosomal disorders, gene disorders, syndromes,
metabolic conditions, brain malformation or injury, parental substance abuse,
maternal malnutrition, or violence Perinatal – for example, labour or birth injury Postnatal – for example, malnutrition, child abuse and neglect, chronic illness, and
degenerative disorders5.
Common characteristics and impacts of intellectual disability
Communication
Challenges with communication are common for many people with intellectual disability. This can make it difficult for a person to navigate service systems.
Some people with intellectual disability have good conversation skills whereas others have limited or non-verbal communication skills.
People with intellectual disability have the right to be supported to make or contribute to making their own decisions (supported decision making). Even when an individual has a legal guardian or appointed nominee (substitute decision making), it is the responsibility of the guardian or nominee to support them increase their capacity to make decisions.
For both supporting and appointed decision makers, the rights, dignity, interests, choices and wellbeing of the person with intellectual disability are paramount.
People with intellectual disability can be vulnerable to suggestion and may agree to what is asked or said because they think it is expected of them. They may agree with authority figures because they want to please people.
It is essential to check with the participant during meetings to ensure they understand the discussion and are able to communicate their wishes, opinions or decisions. A simple check of
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understanding can be made by asking an individual; “can you explain that back to me in your own words?”
Behaviour
Some people with intellectual disability may have “behaviours of concern” or “challenging behaviour” which may include self-harming behaviour, verbal or physical aggression, or property damage. This behaviour is often a form of communication due to an inability to convey messages through typical forms of communication.
People with intellectual disability who experience difficulty with their behaviour need strategies and support to develop appropriate behaviours. This then allows them to feel comfortable and included in typical community activities.
Physical health and mental health
The physical health and mental health of people with intellectual disability can impact on their functional capacity.
Some individuals with intellectual disability enjoy good health and mental health which allows them to participate fully in work and community activities. Other individuals with intellectual disability have significant health limitations that can restrict personal, social and economic activities, and may require special medical attention.
Complex support needs
Some people with intellectual disability also have complex support needs. This may mean they require supports for daily activities from a range of mainstream and community service systems including:
health and mental health criminal justice alcohol and drug housing education and employment.
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Enabling social and economic participation
Full inclusion
Historically people with intellectual disability have been grouped together in separate settings for living, education, work, and day activities. People with intellectual disability do not need to be grouped together to meet their individual needs for education, work, living or community participation.
For people with intellectual disability, full inclusion means being involved and accepted as equal participating members in the Australian community.
The NDIS provides people with intellectual disability with the reasonable and necessary supports to pursue their areas of interest and fully participate in roles and activities in the community.
Some people with intellectual disability require frequent or intensive support to promote development, maximise independence and well-being.
Expectations
People with intellectual disability are frequently and unfairly at risk of low expectations about their capacity to learn and do tasks.
For example, if we think a person cannot learn to use public transport, we may choose not to teach a person how to use public transport. Without travel training, a person will not get the opportunity to learn how to travel.
This low expectation can be a self-fulfilling prophecy. It can lead to an individual becoming dependent on others to do daily tasks despite having the capacity to learn and take on these tasks independently.
Research and lived experience indicates we can assume people with intellectual disability can learn, work and participate in community activities.
Skill development and support
Research and lived experience have shown people with intellectual disability may find it difficult to generalise or transfer skills from one setting to another. This makes it essential for skill development to happen in the place a person with intellectual disability is to perform that skill.
For example, the most effective open employment strategy is to train a person with intellectual disability in a regular workplace in the open workforce6.
A person with intellectual disability may benefit from NDIS supports like taking part in a vocational ‘discovery’ process. This allows the person to explore their strengths and interests in the context of work. Volunteering can also be a first step in building confidence and connecting to the community and the idea of employment.
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Once in work, many NDIS participants with intellectual disability may need regular, ongoing support in the workplace to help them undertake daily work tasks, as well as develop and maintain skills in the workplace. This level of support to work has traditionally been provided in an Australian Disability Enterprise (ADE).
Assistive technology may also be required to support participation in work.
How can I tailor a meeting to suit a participant with intellectual disability?
Every effort must be made to enable people with intellectual disability to lead discussions and actively participate in meetings.
Consider what will support a successful planning meeting. Do not assume what a person may need. It may be helpful to:
provide written information in easy to read English before the meeting provide the questions and points to discuss before the meeting if the person has a communication aid, ensure it is available for the meeting ask the participant what support they may need to participate in the meeting use pictures or objects, such as a clock or calendar when explaining abstract
concepts such as time always talk directly to the person wherever possible, not to a support person speak respectfully in an age-appropriate way. Allow the person whatever time they
need to respond hold meetings in a quiet setting free of distractions and take breaks if required to
maximise attention consider having a second meeting to ensure everything is discussed consider having a family member to participate in the meeting as families often play
an active role in the lives of people with intellectual disability. This will require
consent from the person, unless a family member is a legal guardian, appointed
nominee or child representative consider having an advocate who is not a family member to participate in the
meeting.
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Helpful links
Inclusion Australia
Version control
Version Amended Brief Description of Change Status Date by
1.2 KHM678 Annual review and inclusion of new DRAFT 2020-02-18 information on employment.
2.0 CRG656 Class one approval. APPROVED 2020-03-13
1 American Association on Intellectual and Development Disability (2010). Intellectual Disability: Definition, Classification, and Systems of Supports. AAIDD: Washington. American Psychiatric Association (2013). Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Arlington, VA: American Psychiatric Publishing 2 Significant limitations are defined as approximately two standard deviations below the mean for a standardised assessment of intellectual functioning and adaptive behaviour 3 NDIS COAG Disability Reform Council Quarterly Report, 31 December 2019, page 103. 4 Australian Institute of Health and Welfare 2018. Disability support services: Services provided under the National Disability Agreement 2016–17. Canberra: AIHW 5 American Association on Intellectual and Development Disability (2010). Intellectual Disability: Definition, Classification, and Systems of Supports. AAIDD: Washington. 6 (a) Department of Social Services. National Disability Employment Framework – Issues Paper 2014. Migliore, 2010. (b) International Encyclopedia of Rehabilitation. Centre for International Rehabilitation Research Information and Exchange (CIRRIE).
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