Navigating the National Disability Insurance Scheme (NDIS) is far from simple - so how do we make it work for our families? Read on for pearls of wisdom from recent episodes of NDIS Know-how, the award-winning podcast for parents of children on the scheme.
To get what our kids need to live good lives, we parents would walk through fire. So why not save ourselves a bit of the burn? Here are some top pointers from three mums masterfully wrangling the NDIS.
Paint a fuller picture at NDIS plan reviews
Sydney’s Ingerlise Svaleng, whose seven-year-old daughter, Maia, has Down syndrome, is a big advocate of highlighting a child’s strengths. And all the more so in a system geared toward their so-called deficits.
“When we first got onto the NDIS I would sit up all night before our plan review meetings crying, because it felt so wrong taking part in such a problems-focussed model,” Ingerlise recalls. “It felt like I wasn’t able to stand up for Maia the way that I wanted to.”
She remedied this by writing a letter to include in Maia’s NDIS plan review - one that painted a fuller picture of who her daughter is.
“I wrote about all her beautiful strengths, who she is as a person, how she adores the Wiggles and gives the best koala cuddles. I wrote that on the next couple of pages, you’re going to see reports about all the things that Maia can’t do, but beyond that, she’s also an incredible human being that brings so much joy into our lives,” says Ingerlise.
“You have to stand up for what’s right, no matter what, but you don't have to go all mother of dragons and burn the bridges down. You can build better bridges by demonstrating what's right and doing things with kindness.”
If something’s not right, push back
Brisbane-based Sarah Thomas is a single mum of twin, 14-year-old boys, Cohan and Lewis. When the boys were three, Lewis had a stroke that led to several diagnoses including cerebral palsy and epilepsy.
Sarah says that if your child’s NDIS plan doesn’t cover their needs - as was once the case with Lewis’ plan - you need to start the process of a plan review.
“It’s just another thing that we have to do. But if you don’t fight, you don’t get,” says Sarah. “Most of the time I’m hearing that people are getting what they want reinstated back into their plans after a fight. It’s not fun. It’s not easy. But it's definitely worth doing.”
When it comes to handling NDIS admin, Sarah keeps things as simple as she can.
“I do my invoices once a week in the portal. I have a schedule. I tell my therapist when I’m going to pay them. I don't wait for them to say, Here’s your invoice, pay within 24 hours. I’m like, No, I pay on a Monday because I submit everything on a Sunday. The funds go in on a Monday, so you’ll get paid Monday or Tuesday,” says Sarah.
“Don’t be scared to push back on your therapist as well and say, this is how my system works. When you self-manage your NDIS plan, that’s a whole other full-time job that you’ve got to do. So don’t be dictated by other people, be dictated by what fits into your family.”
Nurture good relationships with NDIS providers
Sarah-Ann Taylor is a Sydney-based brand communication expert and mother of five-year-old Franklin who has cerebral palsy. In the past, Franklin's NDIS plan was agency managed and then plan managed, but Sarah-Ann’s found a sweet spot in self-managing.
“I like the level of control it gives me,” she says. “I also really like the timeliness. One of the biggest things that frustrated me with having someone else managing Franklin’s plan is that I would submit an invoice for a piece of equipment that I needed urgently, and waiting for another company to pay the invoice was causing delays. Being self-managed means I can have the control of getting what I need and I can negotiate with the providers to get it to us more quickly.”
How does she negotiate successfully with providers? By building good relationships.
“Working in professional services, I always wanted to do my best work for clients that were really clear,” says Sarah-Ann. “They could give feedback that I might not have wanted to hear, but if they did it in a really respectful way, I wanted to do my best work for them and keep working with them. So I try to be respectful and share information with providers so I can hopefully pull in favours when we need them.”
Supply chain issues are often to blame when equipment is slow to arrive, in which case, Sarah-Ann suggests asking your providers if they can loan you the item your child needs while you wait.
Listen to the full interviews with Ingerlise, Sarah and Sarah-Ann, along with many other parents and NDIS experts, on the NDIS Know-how podcast.
Melanie Dimmitt
Melanie Dimmitt is a freelance journalist, author and broadcaster. Since her debut book, Special, was published by Ventura Press in 2019, Melanie has written, spoken, podcasted and advocated far and wide for disability families. Creator and host of the award-winning NDIS Know-how and Tubie Talks podcasts, Melanie also publishes an annual magazine, The Blend, for the tube-feeding community.