FOI 24/25-0367 DOCUMENT 8
Down syndrome Disability Snapshot SGP KP Publishing
Exported on 2024-10-18 03:11:35
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FOI 24/25-0367 SGP KP Publishing – Down syndrome Disability Snapshot
Table of Contents
1 Peak body consulted …………………………………………………………………………………………….. 4 2 What is Down syndrome? ……………………………………………………………………………………… 5 3 Common misconceptions about Down syndrome ………………………………………………….. 6 4 How is Down syndrome diagnosed? ……………………………………………………………………… 7 5 Language and terminology ……………………………………………………………………………………. 8 6 Enabling social and economic participation …………………………………………………………… 9 7 Families and carers ……………………………………………………………………………………………… 11 8 How can I tailor a meeting to suit a participant with Down syndrome? ………………….. 12 9 Helpful links ………………………………………………………………………………………………………… 13
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FOI 24/25-0367 SGP KP Publishing – Down syndrome Disability Snapshot
This Disability Snapshot provides general information about Down syndrome to 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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1 Peak body consulted
In developing this resource we consulted with Down Syndrome Australia.
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2 What is Down syndrome?
Down syndrome is a genetic condition – it is not an illness or disease. Down syndrome is the most common genetic cause of intellectual disability. It occurs at conception as a result of an extra chromosome. In Australia, around one in 1,100 babies are born with Down syndrome.
People with Down syndrome have:
• Areas of strengths and other areas where they need more support, just like everyone else in the community. • Some level of intellectual disability. The average IQ for a person with Down syndrome is 50, whereas two-thirds of the general population scores between 85 and 115. • Some characteristic physical features, including a recognisable facial appearance and short stature. • Significant delays in gross motor skills (whole-body movements like climbing and jumping jacks), fine motor skills (smaller muscle actions like picking things up between thumb and finger) and speech development. Plus ongoing difficulties and support needs in these areas. • Increased risk of a range of health issues (which compound developmental delay and can impact functional ability), including congenital heart defects, respiratory, hearing and vision problems, childhood leukaemia, thyroid conditions, gastrointestinal issues, and earlier onset of ageing. Average life expectancy is currently around 60. • Increased risk of younger onset dementia, with more than 50 per cent of people with Down syndrome having a diagnosis of Alzheimer’s disease by the time they are 60. Dementia can be difficult to diagnose and needs to be addressed by a health professional. There are a range of strategies and supports that can be put in place if a person has dementia and Down syndrome. • Increased likelihood of having other disabilities as well as Down syndrome. These can include physical disabilities, sensory disabilities, psychosocial disability or other conditions such as autism, ADHD and cerebral palsy. It is important to ensure that other disabilities and the need for support are not discounted due to the person having Down syndrome as their primary diagnosis. Sometimes, these other disabilities are the ones the person needs the most support with.
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3 Common misconceptions about Down syndrome
• ‘People with Down syndrome all look the same’. o While people with Down syndrome usually have recognisable facial features, each person looks more like their family than like other people with Down syndrome. • ‘People with Down syndrome can’t read, write or learn’. o Every person is different and will have different capabilities when it comes to reading, writing and other skills. • ‘People with Down syndrome can’t communicate’. o Some people with Down syndrome speak well, others can be more difficult to understand and some may use little or no speech. o Many who have difficulty in speaking will understand what is said to them. o Some may need more time to communicate or use communication devices to help them have a conversation. • ‘People with Down syndrome are childlike’. o Adults with Down syndrome are adults and should be respected and treated as such. • ‘People with Down syndrome are always happy and loving’. o People with Down syndrome experience the same range of feelings and moods as anyone else. • ‘People with Down syndrome can’t live an independent life’. o People with Down syndrome can live independently. Some own their own homes and don’t need much support, others need more support and the kinds of support will differ for each person. • ‘People with Down syndrome are better off in segregated settings’. o In the past, many supports such as ‘special’ schools, sheltered workplaces and group homes were provided in separate places. Evidence suggests children with Down syndrome do better in inclusive education and adults with Down syndrome can work in regular workplaces and live in ordinary homes in the community. It’s just about providing the support each person needs in different places.
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4 How is Down syndrome diagnosed?
Diagnosis is often made prenatally by sampling foetal cells to analyse the foetal chromosomes. After birth, Down syndrome is often identified based on the baby’s appearance. The diagnosis is confirmed through a test called a chromosomal karyotype. Using a sample of blood, this test analyses the child’s chromosomes. If there is an extra chromosome 21 in all or some cells, the diagnosis is Down syndrome.
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5 Language and terminology
‘Person first’ language should be used to describe Down syndrome. This means, for example, saying ‘person with a disability’ or ‘man with Down syndrome’.
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6 Enabling social and economic participation
A person’s support needs for social and economic participation will vary depending on their areas of strength and level of function. It is important to explore how a person with Down syndrome can be supported to enable their participation in mainstream activities, education and employment, taking into consideration their interests and aspirations as an individual.
This might include:
• support to access mainstream sporting groups, dance groups or other activities • supports to build capacity to participate in mainstream education settings • social and community participation supports tailored to build ‘soft skills’ for employment • travel training • supports to facilitate participation in mainstream employment and • supports to build capacity for independent living.
Barriers to social and economic participation
A Down Syndrome Australia survey found that people with Down syndrome experience significant barriers to social and economic participation.
Barriers to inclusion and participation include:
• discriminatory attitudes • lack of understanding about Down syndrome and how to support inclusion • bullying in schools and workplaces • lack of accessible information (including in government services, the community, employment and schools) • exclusionary educational systems, settings and practices • difficulty accessing employment • lack of support for transition between school and adult life • difficulty accessing vocational education and skills training • lack of suitable jobs (including accessibility issues and lack of flexibility) • lack of workplace support including recruitment and ongoing support • housing and lack of support to live independently from family • inadequate support services to help build skills and capacity and make community connections • getting to work or community activities.
Supporting social and economic participation
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NDIS funding can support people with Down syndrome to build life skills, capabilities and independence. It can give them a greater understanding of what their interests are and what work might be suitable. It can also assist them build specific work related skills which could support them to engage with other government services such as Disability Employment Services (DES).
While some NDIS participants with Down syndrome may build their capacity and successfully participate in DES, many may need more intensive, regular, ongoing support in the workplace to help them meaningfully participate at work. This support is generally provided by Australian Disability Enterprises (ADEs).
In some instances work adjustments or NDIS funding for specialist disability assessment services can help create opportunities for jobs to be adapted to meet the capabilities and strengths of the individual.
Also consider the need for personal care support or assistance with travel in the work place.
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7 Families and carers
Families provide different levels of support to a person with Down syndrome, but usually play an active role in providing a range of supports including assisting with daily living tasks, advocating for inclusion, and working to find employment. Families usually have a good understanding of the support the person needs to participate in the community and improve their independence.
While families are usually happy to provide some support, it can affect their own employment, ability to meet the needs of other family members, and their own needs and health, especially as they age.
It is not reasonable to expect a family to be the main source of support for an adult with Down syndrome. It is important to consider for children and adults whether the level of informal support being provided is sustainable and what impact it has on the family.
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8 How can I tailor a meeting to suit a participant with Down syndrome?
Every person with Down syndrome is unique with individual personality, strengths and areas where they need support. It’s important to remember that each person is different in their communication and the support they might need. Some key suggestions to support communication include:
• Get in touch before the meeting and ask what support they need to access and take part in the meeting. • Provide any written material in Plain English or Easy English if required well before the meeting. • Provide as much information about questions and things that will be discussed at the meeting ahead of time. This will give the person with Down syndrome an opportunity to discuss these questions with their support person and to have time to consider their responses. • Always communicate and engage directly with the person with Down syndrome, not the person with them. Be patient and take their lead regarding whether the person with them helps them communicate. • Speak respectfully in an age appropriate way. Don’t treat an adult with Down syndrome as if they are a child. • It can help to use visual information to help explain some concepts and messages. This could be pictures or objects, such as a clock or calendar. Easy English information can be used to help with discussion. • Allow the person additional time to respond to questions where needed. • Consider arranging a second planning meeting to ensure all elements are covered.
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9 Helpful links
• Down Syndrome Australia
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