Down syndrome Disability Snapshot

SGP KP Publishing

Exported on 2024-10-18 03:11:35

Page 94 of 308

Table of Contents

• Peak body consulted …………………………………………………………………………………………….. 4
• What is Down syndrome? ……………………………………………………………………………………… 5
• Common misconceptions about Down syndrome ………………………………………………….. 6
• How is Down syndrome diagnosed? ……………………………………………………………………… 7
• Language and terminology ……………………………………………………………………………………. 8
• Enabling social and economic participation …………………………………………………………… 9
• Families and carers ……………………………………………………………………………………………… 11
• How can I tailor a meeting to suit a participant with Down syndrome? ………………….. 12
• Helpful links ………………………………………………………………………………………………………… 13

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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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SGP KP Publishing – Down syndrome Disability Snapshot

Peak body consulted

In developing this resource we consulted with Down Syndrome Australia.

Peak body consulted – 4 Page 97 of 308

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.

3 Common misconceptions about Down syndrome

• ‘People with Down syndrome all look the same’.
  • 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’.
  • 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’.
  • Some people with Down syndrome speak well, others can be more difficult to understand and some may use little or no speech.
  • Many who have difficulty in speaking will understand what is said to them.
  • Some may need more time to communicate or use communication devices to help them have a conversation.
• ‘People with Down syndrome are childlike’.
  • Adults with Down syndrome are adults and should be respected and treated as such.
• ‘People with Down syndrome are always happy and loving’.
  • 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’.
  • 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’.
  • 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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SGP KP Publishing – Down syndrome Disability Snapshot

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

NDIS funding can support people with Down syndrome to build life skills, capabilities and independence.

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.

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.

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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SGP KP Publishing – Down syndrome Disability Snapshot

Helpful links

• Down Syndrome Australia

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Fetal Alcohol Spectrum Disorder

Disability Snapshot

SGP KP Publishing

Exported on 2024-10-18 03:11:52

Page 107 of 308

Table of Contents

1 Peak body consulted ……………………………………………………………………………………………..4 2 What is Fetal Alcohol Spectrum Disorder? ……………………………………………………………..5 3 How is Fetal Alcohol Spectrum Disorder 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 Fetal Alcohol Spectrum Disorder? ……………………………………………………………………………………………………………………10 8 What people with Fetal Alcohol Spectrum Disorder want you to remember ……………11 9 Helpful links …………………………………………………………………………………………………………12

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SGP KP Publishing – Fetal Alcohol Spectrum Disorder Disability Snapshot

This Disability Snapshot provides general information about Fetal Alcohol Spectrum Disorder (FASD) to assist you in communicating effectively and supporting the participant in developing their goals. 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 – Fetal Alcohol Spectrum Disorder Disability Snapshot

Peak body consulted

In developing this resource, we consulted with:

• Developmental Disability WA
• Dr Amanda Wilkins, a Developmental Paediatrician experienced in diagnosing FASD and who was involved in establishing FASD C.A.R.E Inc
• Dr Robyn Williams, a Nyoongar woman who completed her PhD on FASD in the south west region of Western Australia
• National Organisation for Fetal Alcohol Spectrum Disorder (NOFASD) Australia.

2 What is Fetal Alcohol Spectrum Disorder?

Fetal Alcohol Spectrum Disorder (FASD) is a term that describes the impacts on the brain and body of a person exposed to alcohol during pregnancy. It is a lifelong disability and people with FASD will experience challenges in their daily living. Each person with FASD is unique and will experience their own strengths and challenges.

To reach their potential they may need support with:

• motor skills
• physical health
• learning
• memory
• attention
• communication
• emotional regulation
• social skills.

Some children with FASD may have shorter than average height, low body weight and a small head size. They may also appear hyperactive and have poor coordination.

It is common for people with FASD to be able to express themselves but may have difficulty understanding, processing and retaining information.

3 How is Fetal Alcohol Spectrum Disorder diagnosed?

FASD is usually diagnosed by a multi-disciplinary team which may include paediatricians, psychologists, speech/language pathologists or occupational therapists. When assessing for FASD, a clinician will consider:

• the person’s history and presenting concerns from an obstetric, developmental, medical, mental health, behavioural, and social point of view
• any diverse features such as unusually shaped or sized head or facial features and other major/minor features present at birth
• whether the child may have been exposed to alcohol during and after pregnancy
• any known medical conditions including genetic syndromes and other disorders
• the growth of the person.

Only 1 in 10 children with FASD will have identifiable facial features. Children with FASD will still have significant developmental impairments even if they do not have physically identifiable features.

An early diagnosis may lead to better outcomes for a child living with FASD. If a child receives early intervention and support, they may be less likely to develop other behaviours and issues in adulthood and the ongoing impact of the condition may be less severe.

Language and terminology

You should use strengths based language when talking about a person with FASD.

Instead of	Please Use
Suffering with…	Person/Individual living with…
Afflicted or affected by	Impacted by
FASD is caused by maternal alcohol use	FASD is caused when a developing baby is exposed to alcohol
Alcoholic/addict	Women who use alcohol or drugs

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5 Enabling social and economic participation

Therapy and support services can be beneficial to enable social and economic participation for people with FASD. Supports will vary depending on the age and circumstances of the participant. Children under 7 years with FASD will be supported by the Early Childhood Early Intervention approach. Some young children may present with global developmental delay, before they have a formal diagnosis of FASD.

Common therapy supports include speech therapy and occupational therapy. People with FASD may also benefit with support from counsellors who are experienced in working with the disorder.

They may support people with FASD with:

• developing and improving communication, comprehension, and literacy skills
• learning social skills to develop and maintain friendships at school and in the community, and protect against isolation
• improving their memory and ability to process information
• capacity building in concepts such as planning, time, money and problem solving
• participation in programs to support self-regulation, emotional regulation and calming responses such as the “Zones of Regulation” program
• sensory processing skills
• daily living skills such as dressing, tying shoelaces, and writing
• education support and instruction for maths and other subjects
• developing social, educational and emotional maturity.

6 Families and carers

Families can provide different levels of support to a person with FASD. They assist with daily living tasks and encourage the participant to find a job. Family members may have a good understanding of the support the person needs to participate in the community and work towards independence.

While families are usually happy to provide support, it can impact their own employment, the needs of other family members, and their own needs and health – especially as they age. It is important to consider, for children and adults, whether the level of informal support being provided is sustainable and how it may impact the family.

Biological mothers of children with FASD may experience guilt or concern that they will be blamed for the disorder. It is important not to make assumptions about how or why an individual was exposed to alcohol during pregnancy. Many mothers of children with FASD do not have problematic patterns of alcohol use, may have been unaware of the early pregnancy and are not neglectful parents. They may feel frustration at the attitudes of health care providers toward them. This can affect their confidence in their ability to parent a child who already faces many challenges.

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How can I tailor a meeting to suit a participant with Fetal Alcohol Spectrum Disorder?

Every person with FASD is unique and has their own individual personality, strengths and areas where they need support. It is important to remember that each person will have different needs.

You can tailor a meeting to suit the participant by:

• giving the person time to think about their answer and respond – some people will need more time than others
• asking questions to make sure the person understands you – don’t assume the person’s response means they have understood
• communicating in short, simple sentences and using Plain English
• keeping the number of people in a meeting to a minimum as the participant may be overwhelmed with too many people
• having shorter meetings, with follow ups if necessary, to get relevant information across
• reducing distractions such as visual distraction, background noise and artificial lighting if possible
• giving the person information about what will be discussed at the meeting ahead of time to give them an opportunity to consider responses and prepare with a support person
• communicating and engaging directly with the person with FASD, not just their family member, carer or another person who attends the meeting with them
• speaking respectfully in an age appropriate way
• visual information can be helpful to explain some concepts and messages, such as pictures or objects like a clock or calendar
• using Easy English written information to help with discussion
• writing the discussion points in simple dot point format and include any decisions made, this will be a helpful memory aid for a person with FASD.

8 What people with Fetal Alcohol Spectrum Disorder

want you to remember

• Children with FASD may engage in behaviours that look like lying and can make poor decisions. This can mean young people with FASD are more likely to be involved in the justice system. The desire to please and difficulty remembering can have a significant impact in these situations.
• An individual with FASD may experience difficulties with impulse control, understanding consequences of actions and risks. This results from impairments in memory and poor connection between emotional and logical thought.
• Engaging in social interactions can be difficult for people with FASD, and if people behave differently to their expectations, they may respond by over-reacting or shutting down.
• Sometimes people with FASD may find it difficult to focus on, and give or maintain attention to a person or task.

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SGP KP Publishing – Fetal Alcohol Spectrum Disorder Disability Snapshot

Helpful links

• NOFASD Australia
• FASD Hub Australia
• DDWA - Supporting School-age Children with Fetal Alcohol Spectrum Disorder
• Marulu Strategy
• Practice Guide - Early Childhood Early Intervention
• Guide - Conversation style guide

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Fragile X syndrome Disability Snapshot

SGP KP Publishing

Exported on 2024-10-18 03:12:05

Page 119 of 308

Table of Contents

• Peak body consulted …4
• What is Fragile X syndrome? …5
• How is Fragile X syndrome diagnosed? …6
• Language and terminology …7
• Enabling social and economic participation …8
• Families and carers …9
• How can I tailor a meeting to suit a participant with Fragile X syndrome? …10
• What people with Fragile X syndrome want you to remember …11
• Helpful links …12

FOI 24/25-0367 - DISCLOSURE LOG - DOCUMENTS

SGP KP Publishing – Fragile X syndrome Disability Snapshot

This Disability Snapshot provides general information about Fragile X syndrome to assist you in communicating effectively and supporting the participant in developing their goals. Each person is an individual and will have their own needs, preferences, experiences and capacity. This information has been prepared for NDIA staff and partners and is not intended for external distribution.

Peak body consulted – 3 Page 121 of 308

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SGP KP Publishing – Fragile X syndrome Disability Snapshot

Peak body consulted

In developing this resource, we consulted with Fragile X Association of Australia.

Peak body consulted – 4 Page 122 of 308

2 What is Fragile X syndrome?

Fragile X syndrome is a genetic disorder and is the leading worldwide contributor to inherited developmental disability. It is caused by a mutation (change in DNA structure) on the X chromosome. The FMR1 gene is responsible for producing a protein important for brain development. When this gene lengthens through the mutation, it switches off production of the protein involved in brain development and other functions.

Fragile X syndrome occurs in around 1:3600 males and around 1:4000-6000 females. Fragile X syndrome is inherited from a female carrier of the FMR1 gene premutation. A premutation carrier does not have Fragile X syndrome, but may have mild expressions of some traits such as anxiety, social avoidance and difficulty with planning and organisation.

Men and women can be carriers of the premutation but only female carriers can pass on the syndrome to their children. Male carriers will pass on the premutation to their daughters who then become carriers. One in around 250 women are Fragile X premutation carriers, often unknowingly. As women have two X chromosomes, there is a 50% chance that women who are either premutation carriers or have Fragile X will pass on the syndrome to their children.

The impacts of Fragile X syndrome are lifelong. Key characteristics of Fragile X syndrome include developmental delay and anxiety (hyperarousal). There is a genetic link between Fragile X syndrome and autism spectrum disorder (ASD). Approximately 50% of males and 30% of females with Fragile X syndrome also have a diagnosis of ASD, and many other males will have autistic-type traits.

The impacts of Fragile X syndrome include a wide range of difficulties such as:

• daily living (anxiety, motor delays, difficulty sleeping, eating issues, toileting, etc.)
• learning challenges including short term memory, difficulty with abstract concepts and planning, expressive language deficits, inattention
• speech and language, including delayed speech or being fixated on something (perseveration)
• behavioural and emotional impacts such as anxiety, ASD, Attention Deficit Hyperactivity Disorder and aggression
• other social impacts
• medical impacts including low muscle tone, epilepsy and ear infections.

The effects of Fragile X syndrome will vary for each individual, ranging from mild to severe. While males commonly appear more severely affected by Fragile X syndrome, some females may also be severely affected. Intellectual disability occurs in 80% of males and about 30% of females with Fragile X Syndrome.

With appropriate care and supports, people who have Fragile X syndrome have a normal life expectancy. Support needs may change at times of transition and throughout life.

3 How is Fragile X syndrome diagnosed?

Fragile X syndrome is diagnosed by DNA testing, generally from a blood sample. A general practitioner, paediatrician, geneticist or any medical doctor can request the test. An individual should be tested for Fragile X if they have developmental delay, unexplained intellectual disability, or where there is a family history of Fragile X.

Some girls with Fragile X syndrome may be diagnosed much later than boys if there is no history of the condition in the family. Females are less likely to display symptoms because they can conceal the impacts of Fragile X syndrome.

4 Language and terminology

The expression ‘living with Fragile X syndrome’ is an acceptable way to describe someone who has been diagnosed with the condition. ‘Fragile X’ or FXS are acceptable abbreviations to use for Fragile X syndrome.

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5 Enabling social and economic participation

There is no cure for Fragile X syndrome. Early intervention with a multidisciplinary approach and ongoing supports will maximise a person’s capacity for daily living and social and economic participation.

People diagnosed with Fragile X syndrome experience communication, cognitive and behavioural impairments which present challenges in participating in school, employment and community settings.

Supports to enable the participant’s social and economic participation may include:

• Occupational therapy such as sensory integration, developing structured routines, encouraging independence through capacity building, providing support in a workplace.
• Psychological therapies such as support with anxiety/hyperarousal.
• Support coordination to maintain consistency of therapeutic relationships, build capacity of the family unit and support carers.
• Support in the community including support workers to provide consistent, safe supports, and model appropriate social skills in a variety of situations.
• Assistive technology and appropriate equipment in the home, work or volunteer setting.
• Speech and language therapy.
• Education supports such as learning environments that are suitable for the Fragile X learning style and support executive function. Examples include using visual input (pictures, timetables); minimising distractions; using calming strategies; positively reinforcing good behaviour.

---

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6 Families and carers

Families and carers play an important role in supporting the participant who has Fragile X throughout their life. They are usually involved in supporting the participant to gain access to the NDIS, planning and implementation of supports.

As Fragile X Syndrome is an inherited condition, it may impact other family members and the participant’s home life. The family unit may need support through access to respite or support with the participant’s daily living activities or community participation. The impact of raising a child or children with Fragile X syndrome can also affect a family unit. You should consider how funded supports for the participant can result in a break for families and carers.

As Fragile X syndrome is hereditary, the biological mother can experience feelings of guilt or other feelings associated with being a carrier of the condition.

Support coordination can be an effective support for the family/carer and individual with Fragile X syndrome.

How can I tailor a meeting to suit a participant with Fragile X syndrome?

Get in touch with the participant before the meeting to find out what support they might need. When meeting a participant with Fragile X syndrome, make sure to minimise any distractions and reduce any sensory stimuli in the environment. For example, bright or flickering light or background noise. Consider offering breaks during the planning discussion. Before the meeting, consider providing written material in plain English or Easy English, with questions and points to discuss.

During the discussion, allow time for people to reflect on questions and respond. Use open body language and a calm tone of voice. You can check understanding with questions such as “can you explain that back to me?”. Make sure you read back what has been written to ensure the participant is comfortable their goals have been accurately recorded.

Participants will often be accompanied and supported by family members for NDIS discussions, especially to provide support with communication. Where planning discussions involve mothers who are premutation carriers of Fragile X, be mindful of their feelings and possible level of anxiety. Additionally, a parent or family member may also have Fragile X syndrome and need support themselves. This might make it difficult for them to develop or implement the participant’s plan. Consider suggesting that the participant/family/carer involve an advocate, support coordinator, or support worker to support them in the meeting.

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8 What people with Fragile X syndrome want you to remember

• Understanding the impacts of Fragile X on daily living are key to developing supports that allow an individual to live their best life.
• Fragile X syndrome is an inherited lifelong genetic condition, and families may have more than one child with Fragile X syndrome.
• Fragile X is diagnosed by DNA test, not behavioural testing or analysis of physical facial features.
• In around 30% of diagnoses there is no family history of Fragile X syndrome.
• Early intervention and ongoing therapies support capacity building.
• Fragile X presents differently in females and males.
• Females who have Fragile X syndrome may mask their cognitive-communicative disability through shyness or avoidant behaviour.
• Changes in behaviours usually have an additional cause, such as an undiagnosed medical condition, hormonal changes (for example, puberty, or ageing later in life), a change in environment (transitions can be difficult), adverse social interactions (for example, bullying in work or school). Further assessments by a professional will be required.

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SGP KP Publishing – Fragile X syndrome Disability Snapshot

Helpful links

• Fragile X Association of Australia
• National Fragile X Foundation (USA)
• Fragile X Alliance

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Global Developmental Delay

Disability Snapshot SGP KP Publishing

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Page 131 of 308

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SGP KP Publishing – Global Developmental Delay Disability Snapshot

Table of Contents

1. Peak body consulted …………………………………………………………………………………………….. 4
2. What is Global Developmental Delay? ……………………………………………………………………. 5
3. How is GDD diagnosed? ……………………………………………………………………………………….. 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 and with global developmental delay? 11
8. What families of children with GDD want you to remember …………………………………… 12
9. Helpful links ………………………………………………………………………………………………………… 13

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SGP KP Publishing – Global Developmental Delay Disability Snapshot

This Disability Snapshot provides general information about global developmental delay to support you in communicating effectively and supporting the participant and their parent/carer in developing their goals. 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.

Peak body consulted – 3 Page 133 of 308

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SGP KP Publishing – Global Developmental Delay Disability Snapshot

Peak body consulted

In developing this resource we consulted with Association for Children with Disability Tasmania. We would also like to acknowledge resources from Cerebral Palsy Alliance.

Peak body consulted – 4 Page 134 of 308

2 What is Global Developmental Delay?

Global developmental delay (GDD) describes a child who is taking longer to reach developmental milestones in two or more areas of functioning. GDD is diagnosed when a child experiences these delays in two or more areas of functioning which have continued for at least 6 months.

The developmental delays may impact the following areas:

• speech or language development
• gross motor skill development (or big movements), such as walking or sitting
• fine motor skill development (or little movements), such as drawing or holding a toy
• mobility and motor planning
• thinking, understanding and learning
• relating to other people, making friends and regulating their own emotions
• daily living tasks and activities, such as dressing and going to the toilet.

Early intervention programs can give many children with GDD a head start and a better chance to reach their full potential. Supports may improve functional outcomes relating to the child’s daily activities, routines and social participation.

Children with GDD may go on to be diagnosed with another disability and need ongoing support.

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3 How is GDD diagnosed?

GDD is diagnosed in children under five years of age and in many cases there are no known causes. GDD is diagnosed by a specialist – usually a paediatrician – after a developmental screening assessment by a general practitioner or maternal and child health nurse. A paediatrician will often complete a range of tests to assess for possible causes of the child’s developmental delays. A child will be diagnosed with GDD when they are not able to undertake a formal assessment for intellectual disability.

A diagnosis of GDD highlights the need for regular assessments in order to determine the cause and extent of developmental delays. A child’s diagnosis will usually change to intellectual disability, autism, or another condition as they get older. A person will not be diagnosed with GDD for the first time after age 5, – reports could say “initially diagnosed with GDD” as part of the person’s history.

An assessment – either an adaptive functioning or an adaptive behaviour assessment – of the child’s daily routines and participation in the community may also help to determine what types of support will benefit the child. This includes looking at how the child interacts with others at home, kindergarten, or in a community setting. It is important to assess how the child responds to intervention – whether the child is responding to the current supports, or if another intervention is more suitable.

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SGP KP Publishing – Global Developmental Delay Disability Snapshot

Language and terminology

When talking about a child with GDD you should focus on the person, not the impairment. You should generally use inclusive person-first language. Use the phrases such as ‘a child living with GDD’.

As participants with GDD are children, most communication will be with parents or family members. Make sure to focus on the child’s strengths and abilities rather than what they can’t do. Understand that this is a difficult time for parents and make sure that your language reflects this.

5 Enabling social and economic participation

A child with GDD may benefit from early childhood intervention supports from the NDIS as well as mainstream health and early childhood education support. A multidisciplinary team – including physiotherapists, OTs, speech therapists, therapy assistants and medical personnel – is crucial for the assessment of and intervention with the whole child.

Mainstream supports may include:

• a general practitioner
• medical specialists such paediatricians or maternal and child health nurses
• early childhood educators and teachers who can help deliver an early learning program and support the child in pre-school and school.

You may consider recommending NDIS supports in the Core, Capacity Building, and Capital categories. These supports may vary depending on the child’s age and circumstances. For example, support for daily living is largely funded through Capacity Building supports however if there is an evidenced need beyond what would be considered typical parental responsibility, Core supports for children may be considered.

Core supports:

Core supports may be considered in exceptional circumstances for respite or to support informal care from parents or carers. For example, where a child requires a level of support with daily activities significantly beyond the level usually required for children of the same age.

Capacity Building supports:

Capacity Building supports provide the participant with funding to access early childhood intervention (therapeutic supports). These supports will come from a multi-disciplinary team and aim to:

• develop self-care skills with tasks like picking things up, dressing or eating independently
• engage in suitable play activities
• support physical development, for example, walking and overcoming poor balance, muscle weakness, and motor planning
• develop speech and language skills
• auditory processing assessment and other sensory processing assessments
• monitor overall development, and assess and manage behavioural or emotional issues
• assess the child’s vision and vision monitoring every 6 months to a year is important as the child develops.

Capital supports:

FOI 24/25-0367 - DISCLOSURE LOG - DOCUMENTS

SGP KP Publishing – Global Developmental Delay Disability Snapshot

Capital supports include Assistive Technology to support the child with GDD with self-care and communication if necessary.

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6 Families and carers

A diagnosis of GDD can be unsettling for family members and carers. They may still be coming to terms with the diagnosis and what changes need to be made as a result. They may be confused and anxious as GDD requires further assessment which may lead to a new diagnosis. Families and carers may experience different emotions at different times as the child’s development progresses.

Families and carers play an important role in supporting a child living with GDD. They are usually involved in supporting the child to gain access to the NDIS, planning and implementation of supports for the individual.

Raising a child with GDD can have a significant impact on a family unit, particularly with other children. The family may need support to access respite, family counselling, and information and training on GDD. This can help parents and carers to understand the different therapies that may be included in their child’s plan.

Families and carers – 10 Page 140 of 308

How can I tailor a meeting to suit a participant and with global developmental delay?

Family members will be the main contact and support for children with GDD and will accompany them at NDIS meetings.

• Allow enough notice for the family member to prepare for meetings (ideally four weeks) and be clear about what ‘prepared’ means.
• Listen non-judgmentally and collaborate with the family member to clarify the child’s needs, as well as their needs to support the child. Ask the person what they find important and don’t make assumptions. Use paraphrasing and clarifying questions to understand their wants and needs.
• Be honest and clear about what you can and cannot do.
• Discuss that information and recommendations from assessments will inform how the next NDIS plan is created to support the child.
• Provide information about your recommendations and why they are relevant, even if it seems obvious.

Parents and family members may not know what support is available. Talk to them about the types of supports that can be included in their plan and how they will be individualised for their child. Highlight what necessary supports and services family members have access to in order to support the child and the family unit as a whole.

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8 What families of children with GDD want you to remember

• Family members/carers may be stressed or experiencing grief, especially if the diagnosis is recent. Be sure to acknowledge their experience and be sensitive to how they might be feeling.
• Families may be concerned that they might not get the right supports for their child, especially long term.
• Families may not know what supports are available, or which professionals they should access. They may be confused about which services will be provided through the NDIS or other mainstream services such as health or education.
• Families may be new to the system and not fully understand how the NDIS works. They may be trying to navigate this while learning to be new parents, or caring for other children in the family unit.

What families of children with GDD want you to remember – 12 Page 142 of 308

FOI 24/25-0367 - DISCLOSURE LOG - DOCUMENTS

SGP KP Publishing – Global Developmental Delay Disability Snapshot

Helpful links

• Cerebral Palsy Australia - Global Developmental Delay
• Raising Children - Developmental Delay
• Mencap UK - Global Developmental Delay
• Early Childhood Early Intervention intranet page

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