FOI 24/25-0367 DOCUMENT 11

Global Developmental Delay

Disability Snapshot

SGP KP Publishing

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

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SGP KP Publishing – Global Developmental Delay Disability Snapshot

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.

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SGP KP Publishing – Global Developmental Delay Disability Snapshot

1 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.

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SGP KP Publishing – Global Developmental Delay Disability Snapshot

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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SGP KP Publishing – Global Developmental Delay Disability Snapshot

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

4 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.

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SGP KP Publishing – Global Developmental Delay Disability Snapshot

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:

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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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SGP KP Publishing – Global Developmental Delay Disability Snapshot

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.

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SGP KP Publishing – Global Developmental Delay Disability Snapshot

7 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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SGP KP Publishing – Global Developmental Delay Disability Snapshot

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.

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SGP KP Publishing – Global Developmental Delay Disability Snapshot

9 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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