Helping Jason fight the fight
COFFS Harbour man Jason Parbery is looking forward to having a Friday counter lunch at his local pub, now that he has support to get there through his National Disability Insurance Scheme plan.
“I haven’t been out for a counter lunch for so long because all my mates work full-time while I’m stuck at home,” he says.
“But now that I’ve got my great support worker Dave Thomas to help me, it’s something I can really look forward to doing a bit more often.”
The 49-year-old has done it tough for many years. Despite living with cerebral palsy and battling chronic pain, Jason has been the main at-home support for his mother since his father passed away 20 years ago.
“I was also Nan’s carer for 12 years but since she passed in 2006 it’s just been mum and I, both doing our best on the pension,” he says, adding that he had very little personal support prior to joining the NDIS in December last year.
“When I joined it really was Christmas come early!”
Jason has used a walking stick to get around for much of his adult life but is now using a walker as his strength declines.
“I’ve been trying to fight my physical disability for as long as I can remember, since I was a kid in calipers,” he says.
“I know at some point I’ll have to accept going into a wheelchair and once I’m in, that’ll be it – but not yet.”
Left school early to enter the workforce
Jason’s battle against the physical limits caused by his disability saw him leave school early to take up a trade and enter the workforce.
“I enjoyed my time at school and have some good mates from those days, but I wasn’t making much progress so Dad pulled me out halfway through Year 8 and trained me up in his trade as a barber.
“I did the formal apprenticeship and got my ticket, then worked full time as a barber until my chronic pain got too much from standing on my feet all day. That was in 1993, it was really quite shocking to lose my income and find myself on the disability support pension.”
He hasn’t worked since then and it’s definitely something he is upset about as he misses the social interaction and chance to earn a decent living.
Jason’s pain stems from a malformed hip, which led him to have a hip reconstruction on his left hand side in 2010. Despite the operation he still experiences intermittent severe pain from his sciatic nerve, which causes sleeplessness and back spasms.
“Doctors didn’t pick up on my hip issue until I was 29, by which stage I was already having a lot of pain but didn’t know why,” he says.
“I take medication for the back spasms which helps.”
Feeling more upbeat
After years of feeling there was not much to look forward to in life, Jason says he now feels much more upbeat and “better within myself”.
“I had a lot of help from local disability advocate Robyn Palmer, who assisted with my application to join the NDIS and then helped with working out what I needed in my plan,” he says.
Now Jason has regular assistance from support workers, principally Dave from R & R Care who comes every Tuesday and Friday to help with personal care and taking him out of the house for shopping and other activities.
“One of the best things for me has been connecting with Dave, who has just been great – he goes above and beyond in helping me live my life,” Jason says.
“I can drive my own car but having someone to get my walker out of the back and open doors for me, it’s those little things that count so much.
“My arms and my hands are still fine but I am beginning to lose a bit of strength in my left hand.”
His NDIS plan also funds a cleaning service for two hours each week for Jason’s room and the home’s common living areas, and a Support Coordinator to organise his appointments including with an occupational therapist and a physiotherapist.
His Local Area Coordinator from NDIS partner Blue Sky Communities also helps out as needed.
“I’ve tried to maintain my independence for as long as I can but it’s finally at that stage where I recognise that I need help, and I’m now getting that help,” he says.
NDIS funds bathroom modifications
About six weeks ago planning work began on Jason’s NDIS-funded bathroom modifications, which will see a new walk-in shower installed along with fresh tiling and a widened doorway sometime in the next few months.
“I’m really looking forward to it being done, it’s going to make such a difference to my life,” Jason says.
“Mum’s a lot happier as well because the support I now get through my NDIS plan takes the pressure off her. The household is definitely happier now that I’m happier within myself.”
The NDIS is now supporting more than 400,000 Australians with disability, including more than 175,000 people who are receiving support for the first time. On July 1, the NDIS marked seven years since its inception and is now available to all eligible Australians. More than 124,000 people in New South Wales are now being supported.
The NDIS provides eligible Australians with disability with the supports they need to live more independently and to increase their social and economic participation.