Family fights NDIS annually for life-sustaining care for severely disabled six-year-old
By
Kate Lyons
The bagel they save for the regulars. Don't skim, savour.
Summary
This article details the struggles of June and her six-year-old daughter Sienna, who has severe cerebral palsy and multiple comorbidities, including lung disease requiring 24/7 oxygen and suctioning every 5-10 minutes. The family has had to fight the NDIS every year of Sienna's life to secure life-sustaining funding for overnight nursing care. Before receiving NDIS funding, Sienna's parents slept in four-hour shifts to care for her. The piece highlights the bureaucratic challenges, emotional toll, and constant advocacy required from families navigating the disability support system in Australia.
Key quotes
· 3 pulledJune 'can tell you exactly what every cent' in her NDIS plan is for
Sienna's parents would sleep in four-hour shifts, taking it in turns to care for her overnight
Before the NDIS provided funding for overnight nursing care, Sienna's parents would sleep in four-hour shifts
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