When a chronic illness becomes permanent, partners become carers, careers come to an end, and savings dwindle as the various costs of treatment and management mount.

It might be assumed securing some additional support for such challenges would be simple, but the reality can be very different.

For 52-year-old Victorian man Marcus Davis — who lives with an incurable and terminal lung disease that “feels like breathing underwater” — it’s been about 18 months since he first applied for National Disability Insurance Scheme (NDIS) support.