When Heidi first applied for the NDIS on behalf of her young daughter, everything was unfamiliar and confusing. Now, many years later, Heidi is a My Plan Manager consultant and an expert at guiding people through their NDIS plans. She reflects on what it was like when she started out.
Heidi’s 12-year-old daughter Poppy has a chromosome variation disorder called Triple X syndrome, also known as 47XXX, or Trisomy X. Triple X syndrome can present with a wide range of different symptoms – for Poppy it means she has erratic moods and behaviour, physical sensory issues, an eating disorder, growth and muscle tone issues, and language and speech delays, with medical issues still emerging.
When Poppy was first diagnosed six years ago, Heidi accessed supports through early childhood intervention. Things got more complicated when she moved on to the NDIS.
“The process to get Poppy’s first NDIS plan was really confusing for me,” said Heidi.
“I had no idea what to expect at the planning meeting, so I was totally unprepared and the interview seemed to go on forever. It was really overwhelming,” she said.
“And then I just got given the plan. I had no idea what any of it meant. The goals didn’t even make sense for Poppy.”
Heidi didn’t even know plan management was an option until it appeared in Poppy’s second plan. Not knowing what it was, Heidi relied on the advice of friends – something she now regrets.
“Advice from friends isn’t always accurate, and in my case, someone I know referred me to their friend who provided plan management services.
“I didn’t know what was in my budget and the plan manager wouldn’t let us spend any money. It was incredibly stressful, and Poppy missed out on supports she should have been receiving.
“To make my situation even worse, this provider fraudulently claimed $6,000 from Poppy’s plan.”
Heidi said that, although her experience was particularly bad, it stemmed from the same problem faced by many NDIS participants and their support people: lack of knowledge and confidence.
“It was only through my own learning that I realised what this provider had been telling me was totally wrong. Once I had a better understanding, I felt more empowered,” she said.
Now, of course, Heidi has a totally different perspective, as a consultant at My Plan Manager, as well as being an NDIS mum.
“Now I know how to read what’s in our plan, and I know what a plan manager should do!” Heidi says.
“And yes, I have Poppy’s plan managed through My Plan Manager.”
Heidi has shared with us her top tips for navigating the NDIS:
- Find good providers and ask them to recommend other good providers. If they’re a good operator, and you trust them, they’ll usually recommend other great providers.
- Get a plan manager that empowers you. “You don’t want a gatekeeper who will prevent you spending your funds, you want a plan manager who will give you sound guidance without taking away your choice and control.”
- Get the information in a way that makes sense to you. For example, a great portal that shows you your budget in an easy-to understand way will give you confidence when you make choices about spending your funds.
- If you’re confused, get help! If you have a plan manager or a support coordinator, call them: That’s what they’re there for.
We realise that the NDIS can be hard work, and it’s important for people with disability to connect with each other for help and guidance.
That’s why we’ve launched Kinora – a free online community where people with disability and their supports can get advice from each other and Kinora coaches who understand the NDIS.
You don’t need to be in the NDIS or an MPM client to join. Kinora welcomes anybody considering or in the NDIS.