In my last post, I shared some of the stories I heard about the NDIS during a visit to the mining town of Moranbah in Queensland. I flew there to run a Culture Masterclass, a workshop that helps disability providers protect their workplace culture. However, there was one story that I didn’t include because I felt it deserved its own post. For privacy reasons, the names have been changed. This is another long post, but it's worth reading to the end to appreciate the cold hard reality of the NDIS for rural and regional communities.
This story was told to me by a miner from Tamworth (let’s call him Joe), who I was lucky enough to sit next to on the flight from Brisbane to Moranbah. Joe and I started chatting about life as a fly-in, fly-out (FIFO) miner. He told me that he’d been commuting weekly from Tamworth to Queensland for 10 years. Arriving on the Monday and getting back home late each Friday night.
Joe has two children. His teenage son and his wife had both applied for NDIS funding. Both have a total and permanent disability and have been unsuccessful in their applications.
His son’s story
Joe’s wife applied for an NDIS package for her son only to be told that the diagnosis was too old and he would need to be re-diagnosed. She then went to their GP armed with this information to which he replied, ‘What rubbish, a diagnosis is a diagnosis this is just a waste of medical people’s time and money.’
Sue (not her real name) left the paperwork for her GP to fill out. She then continued to chase this up for over 4 months until he finally advised that he had lost it. Sue explained:
“…I had (by) then received all of his paediatric records from the hospital which I was hoping would be sufficient. During this time, my son turned 16 so our carer payment of $127 a fortnight ceased. He also managed to gain an apprenticeship a few months later and at that point I thought for all the hassle with this NDIS is it even going to do anything helpful for him? …I haven’t bothered to lodge the next lot of paperwork for him; hopefully we will get through without it (an NDIS package). TAFE have told us he will have their support as he is still listed as having a disability in their system.”
His wife’s story.
In December 2017, Sue, a 43 year old IT engineer, property manager and mother of two, suffered a crippling quad bike accident while doing a routine check of their family property in the Hunter Valley.
She had toppled down a hill with the bike following her down and landing on top of her. It wasn’t the bike’s fault. Joe said it was just a simple mistake, she had ridden too close to the edge.
Luckily, she was sufficiently conscious to ring Joe at work in Moranbah. He called the person whom he knew would find her on their property the fastest, their teenage son. With the help of his uncle who lived nearby, they found Sue, ushered in the ambulance to the property and the paramedics called in a helicopter. Sue finally lost consciousness in the helicopter on her way to John Hunter Hospital.
She lost a kidney, her spleen and her lungs collapsed; she had broken her right wrist, her arm and eight ribs. She had three spinal fractures, explosive fractures to the left side of her face and needed 78 stitches around her left eye as her sunglasses were embedded in her face.
After the first operation to save her life her liver was wrapped as it was severely lacerated and she received multiple blood transfusions. A second operation was performed two days later to repair her eye, stitch up her stomach and pin and plate wrist and arm.
Sue then suffered two strokes from blood clots in her brain and was placed on life support. She then had two seizures, developed pneumonia in both lungs and two blood clots formed in her left leg. She stayed like this for three weeks until she eventually woke up.
The family were told her injuries were so severe and, along with with the strokes on top that, they didn’t know what her future would be if she survived.
After three months she was finally allowed to go home to a different kind of life. Sue has just completed 18 months of intensive rehabilitation at a local private hospital. She will never be able to return to her previous life as a farm manager and IT engineer.
A Rehabilitation Specialist in Tamworth determined that her slurred speech, broken right wrist, lost kidney function, poor coordination and severe fatigue meant that she had a total and permanent disability. (To date, all her rehabilitation and support costs have been born by the family and, where possible, their personal health insurance.)
In October 2018, equipped with therapist results and a GP report they applied for NDIS funding. They were declined as Sue was deemed to be still recovering. The brain injury unit, took on Sue’s application, attaching their own allied health reports, the Rehabilitation Specialist's report and a neuropsychologist's report.
In April 2019, their 23 year old NDIS planner advised the couple that Sue was not eligible for the NDIS ‘because she can walk unaided and get herself a glass of water without assistance.’
The fact that she can hold a glass of water is due to the months of support and therapy that the family had either provided themselves or paid for out of their own pocket. Her therapists and the Brain Injury Unit were stunned that the NDIA would go against the recommendation of a Rehabilitation Specialist.
Just to confirm: Sue is under 65 and has the medical and allied health evidence to confirm that she has a total and permanent disability.
She still needs daily support with basic living tasks. They pay a cleaner to come three days a week to get the basic household chores done. She is only allowed to hang out one basket of washing a day, any more and she can’t use her arms the next day because of the pain.
She still needs rehabilitation therapy from an OT, a physio and a speech therapist. She struggles with walking due to fatigue and the pain in shoulder from the stroke; she struggles with showering and other daily tasks. They have had to install a bidet for toileting, a hand held shower, purchased multiple cushions for sitting due to spinal fractures and are looking to purchase a special walking aide as she can’t stand for any length of time. They are also looking to purchase a CPAP machine as Sue has now developed severe sleep apnoea since her accident.
When I met Joe on that plane three weeks ago, he was still in shock that his wife did not qualify for support. He still travels to Moranbah each week to earn a living to pay for all of this and Sue is unable to earn any wages.
Joe has not complained to the NDIA, or to any providers, politicians or public servants. He has a ‘there’s people worse off than us’ kind of stoicism that I recognised in other faces and other stories when I finally arrived in Moranbah.
The truth is:
We urgently need smarter planning and project implementation that listens to the voice and lived experience of the actual NDIS customer.
We urgently need more people with lived disability experience at the frontline of the NDIS implementation.
Market forces cannot work where there is no market. Rural and regional communities are faced with negligible supply and negligible incentives to supply given the complexities of distance and bureaucracy.
Market failure is already happening in rural and regional communities.
PS. This story was gathered over a series of emails after my first encounter with Joe. If you are in a position to fast track an appeal to the NDIA for this family please email me at firstname.lastname@example.org
Your support will remain confidential.
Many thanks, Fran