Navigating the NDIS while battling the unknown
Emma O’Kelly was living large when an extremely rare auto-immune disease unexpectedly plunged the 22-year-old into the long-term health care system.
She was only the second recorded case of this disease in the world, which was a piece of trivia that gave her no comfort as she found herself paralysed, for more than eight months, at Caulfield Hospital.
At the time she became sick, Emma was studying nursing and had recently been on a placement with Alfred Heath in the ward where she was now being wheeled in, unable to move.
Given the rarity of her ailment, Emma had no idea how long recovery would take, or even if she would enjoy a full recovery. It was a confronting moment when Alfred Health staff told her that they believed she should apply for the National Disability Insurance Scheme (NDIS).
The NDIS is designed to help people with permanent disabilities enjoy their best daily life, over the long term, and so Emma and staff began assembling a list of what she might need to be the best she could be, in her physical state.
"I found it confusing to begin with, but staff were great - they collected all the information and reports, and applied on my behalf," Emma said. "They had a booklet with all my info, including quotes, treatment requirements and the rest."
Her plan involved funding requests for physio and occupational therapy, along with a wheelchair. Emma says it was tough being labelled permanently disabled within the NDIS plan, but the honest communication from staff, along with hope that she would continue to improve, meant she was comfortable with such an assessment.
Emma’s main memory of the NDIS process is how long it took, possibly because she was an early client and the processes were new. "I had left the hospital by the time I had my plan meeting," she said. "It was actually pretty relaxed. There was my dad and me, and the NDIS person, who said the Alfred booklet with all my info was great, and that she had absolutely everything she needed."
Her plan was approved with ongoing care and supports now funded.
Emma is now making a strong recovery and is walking again - and has even been told that running isn't out of the question. While she still requires NDIS-funded weekly visits to an exercise physiologist and sees a physiotherapist every six weeks, Emma is back at university, studying public health and health promotion.