Supported Independent Living (SIL) for Joubert Syndrome
When Supported Independent Living suits Joubert Syndrome, what SIL funds, and how to get it into your NDIS plan.
Supported Independent Living (SIL) funds the day-to-day help someone needs to live in their own home. For many people with Joubert Syndrome who need support across the day and night, SIL is the backbone of independent living. This guide explains when SIL suits Joubert Syndrome, what it funds, and how to get it into a plan.
Is SIL right for Joubert Syndrome?
Joubert syndrome (JS) is a rare autosomal recessive (and occasionally X-linked) condition characterised by a distinctive structural brain abnormality known as the "molar tooth sign" (MTS) on MRI — caused by hypoplasia or…
What SIL funds (and what it doesn't)
SIL pays for the support workers who help you in your home, based on a roster of care matched to your assessed needs. It does not pay your rent or the building itself — that's covered by your income or, for eligible…
How SIL is funded
SIL sits in your Core budget. Because it's high-cost, the NDIA looks closely at the evidence:
Getting SIL into a plan for Joubert Syndrome
Start by getting a functional assessment that shows the level of daily support Joubert Syndrome requires, and set a home-and-living goal. A support coordinator can help you gather quotes and evidence and connect with…