A TWO-YEAR-OLD disabled boy has suffered emotional and physical trauma without access to specialist equipment that not only helps feed him but could literally be the difference between him ever walking or not. Michael has been condemned to the bureaucratic wilderness for almost a year.
His disability also affects his respiratory system and means he is at high risk of asphyxiation. To eat safely, he needs a specialised chair that supports his upper body.
Surgery is available that could help him walk but can only be performed once he has built up his muscle mass. For which he must have specific medical equipment.
And that’s how the Healey family’s NDIS nightmare began.
“We put in an application in July last year, and almost a year on, despite our begging, we hadn’t received anything or heard anything,” Michael’s mother Trudi said. “The delay has absolutely stunted his development, and probably pushed back the surgery that could be the difference between him having independence or not down the track.”
It took direct intervention from the Member for Nicholls Damian Drum to discover the application quotes for their urgent equipment had expired.
The NDIS had taken so long to process Michael’s claim it was no longer considered current by the time they finally decided to look at it.
But instead of an urgent heads up to Trudi and father Mark, it opted to do nothing and told no one.
Meaning the Healeys were left waiting, and hopeful, for life-changing equipment that was never going to arrive.
They were left chasing equipment approval while still juggling their four other children and a revolving door between their home and the Royal Children’s Hospital in Melbourne for Michael’s treatment.
“Emotionally, physically, financially, it’s all been so incredibly stressful,” Mark said.
“There is just no idea of a timeline. We called and we nagged our NDIS physio who was wonderful in trying to get answers as well. In fact, all Michael’s therapists have been just as frustrated and trying just as hard as us to find out what is happening with the equipment. The NDIA just won’t tell you.”
A spokesperson from the NDIA (a statutory body charged with implementing NDIS) said it regretted the Healey family’s experience and apologised for any distress caused.
“The NDIS is a significant reform improving the lives of Australians with disability, however the NDIA is aware reform of this scale does not come without its challenges and is committed to continually improving the experience of all NDIS participants,” they said.
Their statement did not include a response for questions posed about whether the system was overloaded, and why the family only saw action once Mr Drum was involved.
“Communication has been so poor, it’s been so frustrating,” Trudi said.
“Michael wants to be up and moving around with his brothers and sisters and he is getting frustrated too.
“When he goes to school, we want him to be able to sit on the mat with all the other kids, not up the back in a wheelchair.
“Early intervention is so important, and it’s been such a hard fight to get it,” she said.
Last Thursday, the Healeys got the email they’d been waiting for – approval for both vital pieces of equipment Michael needs.
A sudden response following political and media attention but still good news – albeit, the family will have to continue to work with the NDIS for Michael’s ongoing care, hopefully with some much faster results.