Tracy Roberts can stand for no longer than five minutes, is hooked up to an IV for 10 hours a day and has anaphylaxis attacks so severe that she regularly ends up in intensive care.
The 33-year-old single mother cannot leave the house on her own because she doesn’t have the strength or stamina to maneuver her borrowed wheelchair, which is too small and leaves her in constant pain, and she desperately needs a motorised wheelchair to give her some independence.
But the NDIS has declared she is not disabled and is ineligible for a wheelchair and the support services she previously relied on.
In just a few years Ms Roberts has gone from a working, fit and active mum to her eight-year-old autistic daughter Olivia, to being almost wheelchair bound after being diagnosed with Postural Orthostatic Tachycardia Syndrome, mast cell disease, fibromyalgia and osteopenia.
Ms Roberts spends most of her time in a wheelchair on loan from Ballarat Health Services, but it is too small for her and causes pain.
“I was told two years ago I was better off waiting for NDIS, who were more likely to fund a suitable chair for my body, and having power-assist would ensure I’m able to go out a bit more independently,” she said.
Despite support from her army of specialists and therapists, and with a script written for the wheelchair she needs, on November 22 Ms Roberts received a call from the NDIS saying her funding was revoked.
”Everyone that I’m in contact with, my doctors, therapists, all said to me I’m definitely eligible for NDIS and I was on NDIS for at least five months and then all of a sudden received a phone call saying it was revoked and I was no longer eligible,” Ms Roberts said.
“I had all the services in place – in home support to help clean house, a support worker able to take me to the shops, doctor and help me take Olivia to school, a wheelchair script and was everything in place and was going to be covered – I was so excited to think in a new wheelchair I could be more independent and comfortable.”
Ms Roberts lives with Olivia in a purpose-built home in the back yard of her parent’s property in Redan.
“It was too dangerous to be living alone with Olivia,” she said.
Ms Roberts is appealing the NDIS decision to the Administrative Appeals Tribunal with the help of Fiona Tipping from the Grampians Disability Advocacy Association.
“With Tracy in particular it’s really quite appalling – she was originally declined access to the NDIS and had an internal review which she won and was granted access,” Ms Tipping said. “We then submitted another internal review to question the amount of funding because we thought it wasn’t right … and they revoked her plan.”
Ms Tipping said Ms Roberts was one of many clients caught up in the seemingly never-ending internal review process of the NDIS, which is why she had escalated the case to the AAT.
“They told me the reason why I wasn’t eligible was my situation changed, but my situation got worse if anything and in no way got better … I’m in the chair more than ever and do less than I’ve ever been able to do.”
- Tracy Roberts
For the past year Ms Roberts has received intravenous fluids for 10 hours a day, which help calm down the mast cells that over-react to various and changing common triggers putting her at risk of going in to life-threatening anaphylactic shock.
Ms Roberts is also waiting for a pump that will fit in a backpack and will be more discreet than the pole her IV fluids are hooked up to for 10 hours every day.
To get the wheelchair she so desperately needs, Ms Roberts and her family have been forced to fundraise through a GoFundMe campaign.
