Living it: getting the right support early. Shannon & Lily’s story

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 Shannon* and Lily’s* story. Shannon talks openly about Lily’s diagnosis, their journey with the NDIS and how they use her funding to best support her needs and goals.

When Lily was around 18 months old, Shannon started noticing that her daughter wasn’t picking up language in the way she expected. Despite passing the newborn hearing test, Lily still wasn’t talking much. Shannon was told by her GP to try ear drops, but the delays continued.

By the time they saw an ENT and completed more hearing tests, the cause became clear. “They said that she had pretty significant hearingimpairment, which has more than likely led to the lack of language development. Looking back, those initial six months were critical, Shannon says. “We were stuck in a cycle of trying things that weren’t helping, when that’s such an important age for speech development.”

Once Lily had grommets inserted, Shannon noticed improvement. “Her language has improved a lot. We were doing speech therapy privately a little bit within health insurance limits, but the cost of it is just enormous.”

Shannon hesitated about applying for the NDIS at first. Even her paediatrician wasn’t sure Lily would be eligible. “I thought ‘no, it’s not for my kid, she’s just a little bit delayed. She doesn’t need it.’”

But the difference in Lily’s development became more obvious. “I know you’re not supposed to compare, but other kids could come up and ask for a packet of chips or something, whereas Lily would have just pointed.”

Encouraged by her speech therapist, Shannon contacted Uniting Care’s early childhood team. “The early childhood partner was fabulous, but it did take a long time. It took months and months until we finally had a face-to-face meeting with them.”

LILY’S NDIS GOALS

➜ Improve and enhance communication skills

➜  Improve and enhance emotional developmentin a variety of settings and situations.

➜  Improve and enhance social skills in a varietyof settings and situations

➜  Build independent self-care skills

➜  Improve and enhance cognitive development

SETTING UP SUPPORTS

Lily’s NDIS plan was approved four and a half months after they met with Uniting. “The phone call came out of nowhere,” Shannon recalls. “Someone from the NDIS called and said the plan was approved and read out all the budgets. At the end of that phone call when I hung up, I had no idea what I was doing.”

Fortunately, the early childhood partner followed up and helped explain the plan and the available options. Shannon chose plan management and got supports in place quickly.

Lily now has regular speech and occupational therapy sessions, both delivered at daycare. That setup means Shannon can keep working full-time while Lily gets the help she needs.

“It’s made such a difference. Her therapists know her well and she feels comfortable with them. We’re focusing on emotional regulation, transitions, sensory needs and her language.”

Lily has made progress with her vocabulary, although her receptive language is still catching up. OT is helping with areas like sitting still, attention and self-care.

Shannon says it’s not always straightforward. Understanding what the funding covers can be tricky, especially
in the consumables budget. “Some things I assumed would be covered weren’t, and others that seemed less essential were. It can be hard to know what’s okay to claim.”

Shannon also worries about what the future might bring. “There’s lots
of changes… what happens if that just suddenly gets cut off or if the goalposts change and then all of a sudden she’s not captured. It is a worry.”

Still, she’s focused on Lily’s development. “I just want her to be at a level with her peers. I don’t want her starting school behind. I’m so blessed that my kid’s getting the support and childcare they need while I’m still working and providing for them.”

A message for other families

Shannon’s biggest advice for other families is to start early, even if you’re unsure. “My regret was the first time that I got told that we needed NDIS, I said, ‘No, that’s not me, it’s not my kid,’ because I had that stereotype of what it is and that bias of what is a disability. So my advice to everyone would be, even if you’re not sure, just get your name on the list.”

*Shannon’s and her daughter’s names have been changed to protect their identity. Shannon and Lily are Leap in! members, and no photographs have been included to safeguard their privacy.