What Support Is Available For My Child Born With Down Syndrome?

The National Disability Insurance Scheme, NDIS, was established to provide individualised support for eligible people with permanent and significant disability, their families and carers. If your child has been born with Down Syndrome and the disability impacts their daily life you may be eligible to receive support under the NDIS.  

If your child is under the age of 7 you need to access support through the Early Childhood Intervention Programme which is available to all children with a developmental delay or disability. The first step in this process is to contact an Early Childhood Partner and discuss any concerns you have about your child’s development. A search on the NDIS website will provide contact details of partners in your local area Offices and contacts in your area.

Your Early Childhood Partner will then connect you and your child with support in your local community, such as appropriate health facilities and educational support, such as playgroups and other early childhood programs.

Your Early Childhood Partner will also monitor and review your child’s progress against the goals you have set for them. Together with other providers involved in your child’s care,  their role is to support your family to improve your child’s independence and participation in everyday activities. 

What Happens After My Child Turns 7?

 Although children with Down Syndrome over the age of 7 do not have automatic eligibility to access the NDIS, almost all of the people who have applied have been accepted into the scheme.

In order to apply for access to the NDIS, you must complete an access request form and provide evidence of your child’s eligibility. As part of their role, your Early Childhood Partner can assist you when it comes to applying for and accessing NDIS funding after your child turns 7. They will work with your family to develop a plan that supports your child’s goals and link you with appropriate chosen providers.

It’s not enough to simply provide evidence your child has Down Syndrome. You will need to provide evidence of the impact the disability has your child’s everyday functioning, including their ability to communicate, learn, socialise with other children and manage their own self-care

The evidence you provide to the NDIS must be recent, provided by one or more of your child’s treating health professionals and relevant to their primary disability, in other words, the one that impacts most on your child’s daily functioning. For example, you may need to provide reports from your child’s paediatrician or psychologist and they need to have been treating your child for at least 6 months.

Once your child has been allocated funding through the NDIS there is a range of disability providers throughout Australia who may be able to support and assist your child as they manage a diagnosis of Down Syndrome and adapt to day-to-day life with the condition. The NDIS will fund support that is considered reasonable and necessary and this may include educational support, speech and occupational therapy, assistive technology and transport where necessary. This funding is available throughout your child’s life and the aim of it is to support your child to gain independence and fully participate in society regardless of their disability.