The NDIS: A Lifesaver for Single Mom and Her Son with a Rare Condition

Years well up in Sarah Miller’s eyes as she describes the incredible opportunities the National Disability Insurance Scheme (NDIS) has given her son, Ethan, and their entire family.
A single mother of three, Sarah’s eldest, 12-year-old Ethan, was diagnosed with a rare chromosomal disorder called Q10 26.3 translocation to 8P. This condition manifests in several ways, including Duane syndrome (a congenital eye disorder that affects vision), two types of epilepsy, kidney issues, a heart murmur, and Perthes disease, which impacts his mobility.
“Ethan’s condition makes daily life a challenge,” Sarah explains. “But since he joined the NDIS, things have gotten so much better. He now receives regular therapies that I simply couldn’t afford before.”
Ethan’s physiotherapist played a crucial role in identifying Perthes disease early on. “If it hadn’t been caught, he might have needed a hip replacement,” Sarah shares. “Hopefully, with physio, we can avoid that altogether.”
“Regular therapy was something I’d always dreamed of for Ethan,” Sarah continues. “But as a single parent working towards my degree to improve our lives, it was just out of reach. Having it recognized as ‘reasonable and necessary’ by the NDIS was a huge relief.”
The impact extends beyond physical therapy. “Ethan’s occupational therapist has helped his writing improve tremendously,” Sarah beams. “I’ve seen such a difference!”
The NDIS also provides much-needed in-home support. “A few hours a week allows me to attend classes and work on time,” Sarah explains. “Finding the right support worker was important. I wanted someone qualified, female, and someone Ethan could connect with. Sunshine, a local provider, connected us with Emma, and it’s been a perfect match. Ethan adores her, and she feels the same way.”
Emma picks Ethan up from school on Mondays and helps him develop life skills at home on Wednesdays. “She helps him get dressed, brush his teeth, make breakfast, and get ready for school,” Sarah explains. “This allows Ethan to take his time in the morning, something I can’t always do. It’s also fostering independence.”
“The NDIS has been a lifesaver for us,” Sarah declares. “Setting it up was challenging, especially while juggling school, Ethan’s activities, and appointments for all three kids. But everyone involved was incredibly accommodating, fitting me in whenever possible, whether by email or phone.”
“I know the initial process can be daunting,” Sarah acknowledges. “But once you’re through it, the benefits are incredible. It’s absolutely worth it! The NDIS opens doors for people with disabilities and provides much-needed support for families like ours. As a single parent, I simply wouldn’t have the capacity to give Ethan everything he needs without the NDIS. It’s a gift, and I’m incredibly grateful.”

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Adarsh Dutt

Adarsh Dutt is an award-winning accountant. – Winner Chief Financial Officer of the Year 2021 – Finalist Non Profit Accountant of the year Articles by Adarsh
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