ALL Northern Adelaide Senior College student Zach Allen wants to do is get a job and hang out with friends, just like any other 21-year-old.
Instead, he and his family are stuck in a two-year stalemate with the National Disability Service (NDIS) over a life-changing electric wheelchair.
Mr Allen suffers from duchenne muscular dystrophy, a genetic disorder which progressively degenerates the muscles and has left him wheelchair-bound for most of his life.
There is no cure for the disorder and it drastically shortens sufferers’ lifespans, with most not living past age 30.
He currently uses an unfitted manual wheelchair to get around, which requires his mother or a support carer to help push him as he has lost the strength in his arms to propel himself forwards.
A fitted electric wheelchair would allow Mr Allen to live his life more independently, but it costs $35,000 and he and his family need the support of the NDIS to make it happen.
Mr Allen’s mother, Lisa Allen, said despite documentation from numerous independent sources, the family has been told it hasn’t provided enough proof to suggest Zach should be in a wheelchair, let alone an electric wheelchair.
“The NDIS is appalling, it’s not turned out how they expected it to turn out,” she said.
“We’ve given them documentation from the physiotherapist and the occupational therapist at the Lyell McEwin Hospital, from psychologists and psychiatrists.
“We also have documentation from Novita’s physiotherapists, an occupational therapist, his own doctor on his mental health because of the trouble the NDIS has caused, and there’s still not enough information.”
The Allen family won an appeal on December 31 against the NDIS to have Zach’s funding package increased as it wasn’t sufficient for his needs, but Mrs Allen said NDIS was yet to contact them about a meeting to organise a new package.
Mr Allen said he just wants to live a normal life like his classmates and friends, but the NDIS blocking his bid for an electric wheelchair has made him totally dependent on his
family and support workers.
“I could get around, I could meet friends, just typical things someone my age would do,” he said.
“It would make a big difference to my quality of life.
“I need to be able to learn and get a job, I can’t sit around home all day.”
Mr Allen’s two-year battle with the NDIS has had a severe impact on his mental wellbeing, as he struggles to live out a normal life while not receiving the resources he requires.
He spent two weeks at the Lyell Mac in October due to a severe decline in his mental health, something his mother attributed to his needs not being met by the NDIS.
“He sees a psychologist every week and he sees a counsellor, and it’s a daily battle for Zach mentally,” Mrs Allen said.
“The woman at the NDIS I dealt with a month ago had no idea what Zach’s condition even was and when I gave her a brief run down her words were ‘I know how you feel’.
“She doesn’t know how I feel, or Zach feels, at all.”
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