Down syndrome

Government support

Navigating the National Disability System

The information below provides details on the parts of the disability service system that are delivered nationally or are nationally consistent - in particular the National Disability Insurance Scheme (NDIS). Historically disability services have been delivered by state and territory governments and it will continue in this way until the NDIS is fully rolled out. These are somewhat fragmented and difficult to navigate and we advise that you contact your local Down syndrome association for details. This section has been arranged to be consistent with the National Disability Strategy.

National Disability Insurance Scheme Back to top

The National Disability Insurance Scheme (NDIS) is the new way of providing individualised support for eligible people with permanent and significant disability, their families and carers. The NDIS is being introduced in stages, because it’s a big change and the government wants to get it right and make it sustainable. Roll out of the full scheme will commence progressively from July 2016.

NDIS eligibility Back to top

People with Down syndrome are currently not automatically eligible for the NDIS, although they are highly likely to be approved as eligible.

To become a participant in the NDIS, a person must:

a) Meet the age requirements - which are different in the different launch sites

b) Meet the residence requirements - there is a residency requirement plus you must live in an launch site

c) Meet the disability requirements - do you have a disability and whether it will last for the rest of your life or you would benefit from early intervention.

The quickest way to check all these items is via the NDIS 'My Access Checker' available on the NDIS website.

Clearly, Down syndrome is a permanent disability. Unfortunately however, is it not currently one of the conditions that allows for a streamlined process when entering the scheme. The most relevant condition for which a streamlines process is available is 'Intellectual disability diagnosed and assessed as moderate, severe or profound in accordance with current DSM criteria (e.g. IQ 55 points or less and severe deficits in adaptive functioning)'.

Down syndrome is listed on 'List B - Conditions for which permanent impairment / functional capacity are variable and further assessment of functional capacity generally is required.'

The NDIS Operational Guidelines contains all the detail about who is eligible to become a participant in the NDIS.

NDIS planning Back to top

Planning is essential for getting the best from your NDIS package. The early feedback from the NDIA is that, while families often have strong defined long term goals, it is challenging to develop twelve-month or three-year plans.

Launch sites / rollout Back to top

The National Disability Insurance Scheme trial has commenced in:

  • Tasmania for youth aged 15-24
  • The Perth Hills area of Western Australia for people up to age 65
  • The Barkly region of the Northern Territory  for people up to age 65
  • The Hunter area in NSW for people up to age 65 the Australian Capital Territory for people up to age 65
  • The Barwon area of Victoria for people up to age 65
  • South Australia for children aged 6 and under (on 1 July 2014)
  • The ACT
  • The Nepean Blue Mountains area for up to 2000 young people aged 18 and under

Roll out of the full scheme will commence progressively from July 2016.

Learning and skills Back to top

Early intervention

What is Early Childhood Intervention?

Early Childhood Intervention (ECI) is the process of providing specialised support and services for infants and young children with developmental delays or disabilities, and their families in order to promote development, well-being and community participation.

Early Childhood Intervention Services (ECIS) support children with a disability or developmental delay from birth to school entry and their families. ECIS provides therapy and/or education, counselling, service planning and coordination, assistance and support to access services such as kindergarten and child care. Services are tailored to meet the individual needs of the child and focused on supporting the child in their natural environments and in their everyday experiences and activities. The overall aim of these services is to provide parents and families with the knowledge, skills and support to meet the needs of their child and to optimise the child's development and ability to participate in family and community life. Services are provided using a family-centred approach, recognising the importance of working in partnership with the family.

Why are the early years important?

The early childhood years lay the foundation for all future development.

Recent scientific evidence shows that early experiences literally shape our lives by affecting the way the young brain develops. What happens to us in the early years has a major effect on our health and social development right through to adulthood.

Therefore, we must ensure that children's early experiences are positive - that they have a secure foundation for development.

Why are early childhood intervention services important?

The early childhood years are just as important for children with disabilities and developmental delays as they are for all children. All their future development is based on the critical learning patterns laid down during this period.

The early years are also critical for the whole family. This is when families can best begin to learn how to support and nurture their child, how to meet their child's needs, and how to adapt positively to having a child with a disability or a developmental delay.

To achieve these goals, families need the support of Early Childhood Intervention Services.

Making a Start: Building Support for your Child & Family

The booklet provides information for families who have very young children who have a developmental delay or disability. It aims to help families understand what support is available and how to make informed choices for their child and family. The booklet has been designed with a workbook component creating space for reflection around child and families’ needs. We hope this will support families to ensure the early intervention support they receive is linked to their own goals for their child. Particular emphasis has been made on demonstrating ‘natural learning environments’ through photographs depicting typical every day activities. We hope families from all backgrounds will engage with these warm, positive images.

We are hoping the booklet will reach as many families as possible to help them through the beginning of what can often be a complex and emotional journey.

Copies of the booklet can be made available to families free of charge by contacting Carers Victoria on 1800 242 636. Copies of the booklet for services, practitioners and professional associations will attract a small fee of $3 per copy, plus postage. To place an order please complete the order form on ECIA VC's website.

Online copies are also available to download free of charge from the ECIAVIC website.

This information was sourced from www.ecia.org.au and www.eciavic.org.au

Better Start Back to top

Early intervention plays an important part in the development of children with Down syndrome. It may begin in the first months of life, and may continue throughout the early years into school. It includes physiotherapy, occupational therapy and speech therapy.

All children with Down syndrome who are under six years of age are eligible for early intervention funding of up to $12,000 under the Australian Government's Better Start for Children with Disability (Better Start) initiative. In order to access this financial assistance, children must first be registered with the Better Start Registration and Information Service (RIS).

When you contact the Better Start RIS (on 1800 242 636 or online) a Better Start RIS advisor will make an appointment time for an assessment of your child's eligibility, and this can be face-to-face, via telephone, webcam, email or a video link.

Once approved, you will receive a letter of confirmation. You can then decide which therapies you will access, which service providers you will use and how often you will attend therapy sessions, up until the allocated funds are used or your child turns six years. This funding is extra funding for therapies on top of your regular State service.

Your local Down Syndrome Association can offer advice and information regarding your child's development, and can also put you in touch with other families to talk about your experiences and share ideas. They can help you find out what other services are offered in your state or territory and provide more information and guidance regarding your child and Better Start.

For further information, download the flyer (PDF).

Economic security Back to top

Financial support

The Australian Government provides financial support for people who have an intellectual disability that stops them from working, or who are unable to work more than 15 hours per week.

Disability Support Pension (DSP)

The Disability Support Pension is 'income replacement' and is completely separate from a support package from the NDIS or a state or territory government. The DSP can be quite complicated - see this fact sheet for more detail

Employment Back to top

Employment is a key element towards independence for people with Down syndrome; however the pathway to employment can be very complicated as this is different in each state and territory. Check our Education and Employment page, but we strongly recommend that state and territory offices be consulted for up-to-date local information.