Living it
Real-life stories from people on the NDIS, brought to you by Leap in!
At Leap in!, we’re sharing real-life stories from our members about their disability and their experiences with the NDIS. These stories highlight different journeys, disability types and the ways members use their NDIS funding to support their goals. Today, we’re sharing Lisa and her son Hugo’s* story. Lisa talks openly about Hugo’s diagnosis, their journey with the NDIS and how they use his funding to best support his needs and goals.
LISA AND HUGO’S JOURNEY WITH THE NDIS
From the moment Hugo was born, mum Lisa knew he was a special little boy. But as he grew, Lisa noticed he was sensitive to loud noises, seemed easily agitated and had trouble settling at daycare.
People on the outside often misunderstood Hugo’s behaviour. “Sometimes I felt disappointed by their judgment,” Lisa recalls. “They’d say he was naughty or needed more discipline, but they didn’t see the bigger picture.”
Lisa spent hours online looking at conditions like autism, ADHD and Sensory Processing Disorder (SPD). “It was overwhelming,” she says. A local child nurse referred Hugo to a pediatrician, who diagnosed him with Fetal Alcohol Spectrum Disorder (FASD), ADHD and Global Developmental Delay. “There’s guilt as a parent because you see your child’s struggles,” Lisa explains.
Hugo received his first plan through the Early Childhood Approach and learning how to use NDIS funding became Lisa’s focus to help Hugo work toward his goals.
HUGO’S CURRENT NDIS GOALS INCLUDE
➜ To become more independent with his self-care skills
➜ Feed himself using cutlery and have a varied diet
➜ Extend on language and communication skills
➜ Be able to clearly communicate needs and wants verbally and to increase his receptive language skills
➜ Extend playing and learning skills
➜ Extend on his attention span and participate in activities for a longer duration of time
➜ Extend on physical development
➜ Improve awareness of depth perception and visual perception when exploring his environments
➜ Engage in parallel play regularly and participate in group activities.
How Hugo’s funding is used
Most of the funding covers weekly occupational therapy, speech therapy and physiotherapy. The OT helps Hugo with sensory sensitivities, speech therapy improves his communication and physiotherapy helps strengthen his muscles and calm his nervous system.
”Therapies all connect,” Lisa explains. “When Hugo feels settled physically, he can better focus on speech or OT activities. I didn’t realise how sensitive my child was to the environment until we started sensory therapies.” To make the most of their funding, Lisa takes therapy breaks during school holidays and uses therapy techniques at home, like trampoline time, animal walks and sensory play.
LIFE AT HOME AND SCHOOL
Lisa now works part-time to balance her job with caring for Hugo. He recently started prep at a mainstream school that offers an inclusion support program. “We were worried he would regress but he’s wanting to go, which is a massive change!” she says.
Still, Lisa notes that navigating the NDIS can be complex. She encourages other families to look for clear, simple information and offers some advice:
- Prioritise your primary therapy.
Focus first on the most important therapy for your child’s needs. Get onto waitlists as early as possible - Include travel and reports.
Make sure you factor in travel and report writing time, not just therapy appointments, when budgeting your funding - Find the right provider.
Choose therapists who genuinely understand and connect with your child. If it doesn’t feel right, trust yourself to move on - Advocate with confidence.
Your child’s needs come first. Don’t be afraid to speak up and ask questions - Be patient and kind to yourself.
Change happens over time. Remember you’re doing your best, and every little step forward is a win.
Lisa calls the NDIS a “lifeline” for her family. “Without it, these therapies would be out of reach, so even though there’s a lot of information and changes out there, we are very grateful.”
*Only Lisa’s first name is used and her son’s name has been changed to protect his identity. Both Lisa and Hugo are Leap in! members and no photographs have been included to safeguard Hugo’s privacy.
