We’re bringing you 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 Ellen’s story. Ellen talks about applying for the NDIS, navigating her new plan and putting supports in place that work for her day-to-day life.
Ellen is 26 and was diagnosed with autism at 18, just after finishing high school.
“It was difficult during high school because I hadn’t been diagnosed, so it was hard for me to learn,” she says. “I struggled with schoolwork and with fitting in and finding a group of friends.”
It was Ellen’s dad who first noticed the signs. “My brother has autism. He was diagnosed at two and Dad saw I was doing the same things my brother did,” she says. That realisation led to a formal assessment, which took around six months. “I think it took longer because of the masking and how it’s harder to diagnose girls,” Ellen explains.
For Ellen, the diagnosis was a turning point. “Honestly, it was a good thing. It felt freeing.”
Getting started.
Applying for the NDIS brought its challenges. “It caused stress for both of us because the NDIS was new and we didn’t know if I was going to get in. It was also causing stress because of all the appointments we had to attend.”
Ellen received her first NDIS plan two years after her diagnosis. With her dad as her plan nominee, they make decisions together about the therapies and activities she takes on.
Over the years, she has used her funding for a range of supports, including a community life skills program where she learned practical skills such as banking, hygiene, cooking, and travelling in a group. When the program closed, Ellen looked for new activities that aligned with her goals and routines.
Ellen’s NDIS goals.
- Building friendships and social skills within the community
- Building independent living skills to move out of home
- Attend life skills development programs and allied health therapy
- Increase independence from dad in daily activities.
Ellen’s 12-month NDIS plan.
| Core Flexible. | |
|---|---|
| Consumables | $500.04 |
| Assistance with Social, Economic and Community Participation | $26,420.98 |
| Assistance with Daily Life | $13,258.11 |
| Total: | $40,179.13 |
| Stated supports. | |
| Capacity Building – Support Coordination and Psychosocial Recovery Coaches | $2,403.36 |
| Capacity Building – Improved Daily Living Skills | $7,759.56 |
| Capacity Building – Choice and Control | $1,486.32 |
Putting supports and funding in place.
Support worker at home and in the community: One day a week, a support worker helps at home, goes to the gym with Ellen and supports quick trips to the shops
Community participation: Ellen attends a weekly group and is learning landscaping skills like digging, planting and using tools. “I even learned how to drill!”
Occupational therapy (OT): Every second Tuesday, Ellen sees her OT to build skills like reading social cues, something that helps her at her job at Big W where she has worked for the past seven years. They also focus on practical cooking strategies, including writing recipes in a way that makes sense for her.
Working with a support coordinator.
For Ellen, getting the most from her NDIS plan is a team effort, one where she, her dad and support coordinator Natalie are all part of the conversation.
“I remember our first meeting, Ellen was on the loudspeaker with her dad and it was great,” says Natalie. “Sometimes people don’t want to talk on the phone, especially teenagers and even some adults, but with Ellen, she was right there in the conversation.”
Natalie helps link all the pieces together so everyone is on the same page. Early on, she found a new occupational therapist when Ellen’s waitlist dragged on. “We got the new OT on board and started sharing information straight away,” she says.
She also spends time helping Ellen and her dad plan ahead. Together, they’ve talked about future education or training and the possibility of Ellen moving out of the home.
Part of that planning is thinking ahead to times when her dad might not be able to support her, whether that’s a hospital stay or another unexpected event. “We’ve been building a wall of support, connecting with providers, getting communication flowing, so everyone’s ready to step in if needed.”
Whether it’s a quick call with Ellen and her dad, bringing providers together, or planting seeds for the future, Natalie works alongside them so decisions are made together and Ellen’s goals stay front and centre.
Looking ahead.
Ellen’s big goal is to live more independently. “I want to be able to cook more and be more independent so I can live on my own,” she says.
She’s open to different arrangements, such as living alone, sharing with others or even moving in with her brother. Away from work and supports, Ellen channels her creativity into TikTok as Ellen Marie Reads.
“I’m a book reader and I like talking about books I read,” she says. It’s a space to share what she loves, connect with others and build confidence for her next steps.
