Victorian boy forced to crawl after NDIS rejects wheelchair funding
A 10-year-old Victorian boy has been forced to crawl around his home after funding for his wheelchair was rejected by the NDIS. See the video.
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Exclusive: A young boy with muscular dystrophy has been forced to crawl around his home for the past eight months after a request for a wheelchair on the NDIS was deemed not “value for money”.
Jayden Stuart, 10, was diagnosed with the muscle wasting disease three years ago and was reasonably independent until late last year when his condition suddenly deteriorated.
He now cannot walk at all and the family have been fighting NDIS bureaucrats ever since.
He has a mobility scooter for school which allows him to move about by himself and use the bathroom independently, but it’snot suitable for home. There he has to crawl around on his bottom, or ask his mother to carry him.
His family also use his sister’s desk chair to push Jayden, who now weighs 43 kilos, to where he wants to go, to save their backs.
Mum Monica Walker, 42, from Melbourne, said she burst into tears when she received the news that funding for a manual wheelchair had been rejected.
The letter stated that it was not “value for money with respect to the cost and the proposed benefits it would provide”.
“We have to fight for everything,” Ms Walker, who works in retail, said.
“It’s so emotionally draining. It took me a few days to pull myself together after I got that letter.”
She said they had spent many hours and thousands of dollars getting specialist reports, sourcing quotes and trialling wheelchairs.
She said they had a $5000 provision in Jayden’s NDIS plan for a manual wheelchair, but because he has a muscle wasting disease, he needs a lightweight one, which costs more.
The lowest quote they found was $10,950.
“We just could not find one under $5000,” Ms Walker said.
She said Jayden would use a manual wheelchair at home and at school, so he could sit at the same desk level as other kids, as well as at friends’ houses.
“When he goes to his best friend’s house he has to crawl around after his 10-year-old friend,” Ms Walker said. “It’s degrading.”
His grandfather, Michael Walker, 69, said it was an upsetting situation and that his daughter and son-in-law, Rodney, 43, who is a forklift driver, were good hardworking people.
Their rejected application was particularly galling after hearing about all the rorting going on in the NDIS.
“Jayden crawls around on the floor and has to yell for his mum when he needs the bathroom,” Mr Walker said.
“We can see he is getting frustrated and depressed.
“What about his dignity and independence? I thought that was what the NDIS was all about.”
He said he was proud of Jayden for volunteering to undergo drug trials at Royal Melbourne Hospital, after he said he wanted to do it to help others.
“That’s the sort of kid he is,” Mr Walker, a retired fireman, said. “He’s incredible.”
Just hours after The Herald Sun requested comment from NDIS Minister Bill Shorten’s office and then the agency which overseesthe NDIS, Ms Walker got a call to say Jayden would be getting $15,000 of funds for a wheelchair – which is more money thanthey had asked for – and an apology for any stress caused.
“I’m crying again,” Ms Walker said. “This is life-changing. I can’t thank the Herald Sun enough. That we have to come to the media, proves that the system is not really working.”
julie.cross@news.com.au
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Originally published as Victorian boy forced to crawl after NDIS rejects wheelchair funding
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