Peer support for families struggling to access the NDIS with an undiagnosed condition

There are approximately 350,000 Syndromes Without A Name (SWAN) kids living in Australia with an undiagnosed condition at any one time.

According to the 2020 National Strategic Action Plan for Rare Diseases, the total number of Australians with a rare disease is about two million. The vast majority of these rare diseases are genetic and an accurate diagnosis is difficult to make.

For families attempting to access the NDIS, additional support is often required so you can achieve the best possible outcome.

Eligibility requirements to access the NDIS

To access the NDIS you do need to meet specific eligibility requirements.

You must be under 65 years of age and an Australian citizen, permanent resident or Protected Special Category Visa (SCV) holder.

Additionally, you must be living with a disability affecting your ability to perform everyday activities. It also needs to be a permanent condition recognised by the NDIS as requiring ‘reasonable and necessary supports.’ As a result this can make it difficult to access the NDIS with an undiagnosed condition.

You can learn more about eligibility requirements for the NDIS in our article, ‘Am I eligible for the NDIS?‘

What if there is no diagnosis for my child?

If your child has an undiagnosed disability or developmental delay, the NDIS early childhood approach often provides quick access to support for kids younger than seven years of age.

You can receive support through the early childhood approach without becoming a NDIS participant. This is available through the early connections program or early support therapies and strategies.

These programs are in place to ensure families can access all relevant resources and support services for children who may or may not have an official diagnosis.

However, for a child with an undiagnosed or rare condition, accessing the NDIS or disability supports may not be so straightforward after a certain age. The early childhood approach is not available for kids older than seven, meaning much-needed disability support for your child requires full NDIS eligibility.

SWAN Australia provides guidance, information and community interaction for parents, carers and even siblings of children with an undiagnosed or rare condition.

Founder and Chief Executive Officer (CEO) of SWAN Australia, Heather Renton, says ongoing support for parents and children is crucial in the early years of development.

“We know the first five years are when parents feel the most need for support and then often as their kids head towards transitioning [into a new stage of life] that’s another area which they will need support as well,” Ms Renton says.

“Sometimes they just need help understanding what the journey is going to look like.”

Finding support while waiting for a diagnosis

One of the most challenging aspects can be finding the right disability support with no diagnosis. This includes peer support and professional support.

Speaking with your regular general practitioner (GP) or doctor is always a recommended starting point. A maternal health nurse or paediatrician can also assist in referring you to genetic testing services.

You can sign up as a SWAN member to be connected to information, events and a private Facebook Group where you can ask questions and talk to others in a similar position.

Ms Renton says the majority of people seeking support from SWAN are looking for direction.

“Sometimes they come to us and they don’t understand the different types of genetic testing and we can direct them to the relevant information and resources,” she says.

“Parents may want to know how to phrase things when they’re doing a pre-plan for the NDIS, and sometimes they just want to connect with someone else who gets it.”

You can also find professional information through the Patient Pathways Nurse service. It’s a free, confidential service funded by the Federal Government.

Although there are often challenges for parents, it’s important to remain positive, Ms Renton says.

“The more kids that receive a diagnosis, the more it will help,” she says.

“Just because your child doesn’t have an answer today doesn’t mean they won’t tomorrow.”

If you need additional support for your child with disability, you can search for providers near you on DisabilitySupportGuide.com.au.

Have you struggled to access the NDIS with a child that has an undiagnosed or rare condition? Tell us your story in the comments below.

Related content:

Early intervention under the NDIS
What to look for in early intervention supports
Support payments for carers who have a child with disability
How preschool can support your child with disability