Out at the races in November 2020, Sarah Vassallo looked on in delight as her sister, Jessica, chatted happily, enjoying the atmosphere and excitement. “My manager got to talk to Jess and he said, ‘I’m so shocked at how outgoing and open in conversation she is,’” recalls Sarah, 28. “Just a few short years ago, she’d be clinging on to me.”
Only eight months after commencing her NDIS plan, life was opening up for Jessica – and for the family members that love and care for her. “That day was a turning point for me to realise how the NDIS has helped,” says Sarah, whose 29-year-old sister has Desbuquois Syndrome, an extremely rare congenital diagnosis characterised by short stature and intellectual disability, among other characteristics.
Until 2020, Jessica’s family, led by Sarah and her mother Rose, had taken care of all of Jessica’s needs without outside support. “You soldier on yourself, you don’t really ask for help,” explains Sarah, the second oldest of four siblings in a second-generation Maltese family. “I saw Mum take care of Jess and I just followed suit.”
Then Sarah started working in disability care. “I began talking to mentors, researching what the NDIS is and how best to provide for Jess,” says Sarah, a community support worker for people with younger-onset dementia. “I knew I still had to convince my mum,” she adds, chuckling.
It was their Uniting Local Area Coordinator who set Rose’s mind at ease. “She connected us to all the resources. She was very approachable in talking about what we want out of the plan and saying, ‘This is where we can help you and this is how we can do it,’” says Sarah. “And she was so welcoming and considerate.”
Jessica was assigned two support workers and began going out to the library (where she made a friend) and other excursions. At the family home in Sydney’s west, modifications allowed Jessica greater independence in the bathroom. “It’s made a huge difference,” enthuses Sarah, who is also thrilled about Jessica’s new wheelchair, replacing the cumbersome second-hand chair they’d made do with for 15 years.
While Jessica thrives, her family is also finding more balance in life, as the supports allow them to step out of carer mode and enjoy simply being sister and mum to Jessica. Now, Sarah feels less guilt about focusing on her career, or even ducking out to the hairdresser. For the first time, Rose too is savouring some time for herself, as the family begins to explore weekend respite care for Jessica.
Ultimately, though, it’s Jessica who’s more comfortable being herself. “She’s more than capable now of expressing what she wants,” reflects Sarah, of her sister, who loves the Wiggles, Elvis and her weekly hydrotherapy sessions. “The people around her have made such a positive impact on her. She is so cheeky, and thanks to the NDIS and the disability support team she’s with now, it brings it out of her so much more.”
Learn more about how the personalised approach of Uniting LAC can help you or a loved one you care for access life-changing NDIS supports: https://lac.uniting.org/home.