Supported Independent Living (SIL) for Cornelia de Lange Syndrome
When Supported Independent Living suits Cornelia de Lange 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 Cornelia de Lange Syndrome who need support across the day and night, SIL is the backbone of independent living. This guide explains when SIL suits Cornelia de Lange Syndrome, what it funds, and how to get it into a plan.
Is SIL right for Cornelia de Lange Syndrome?
Cornelia de Lange Syndrome (CdLS) is a rare multisystem genetic disorder caused primarily by mutations in the NIPBL gene (or less commonly HDAC8, RAD21, SMC1A, SMC3), which affect cohesin complex function during fetal…
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 Cornelia de Lange Syndrome
Start by getting a functional assessment that shows the level of daily support Cornelia de Lange Syndrome requires, and set a home-and-living goal. A support coordinator can help you gather quotes and evidence and…