Eight-year-old Liam Cox is just like many other boys of his age. He loves to swim, he goes to nippers in summer and he is in grade three at school (‘Maths was more fun last year than this year’). And like any other kid when faced with the prospect of talking to a journalist, he is fidgety and distracted, but it is the nature of the distraction that is out of the ordinary and tugs at the heartstrings. Liam simply cannot take his eyes off his mum Kelly who is buzzing around the house in her electric wheelchair. There is a sense that he is watching over her.
Kelly was born with Landouzy-Dejerine or Facioscapulohumeral muscular dystrophy (FSHD). Even though by her own definition she was no great shakes on the athletics field, Kelly says she had a fairly normal childhood and it was only in more recent times that she has become immobilised by the condition. As recently as two years ago Kelly was still driving and she has only been totally wheelchair dependent for the past six months.
Life was always going to have a different set of challenges for the Coxes but the proverbial really hit the fan when Kelly’s husband Gordon came off his motorbike a few years ago. As a result, Gordon became an L4 paraplegic and in two terrible twists of fate found that he was also left without a financial leg to stand on.
Firstly, the previous owner of the bike had bought a dodgy green slip that didn’t grant a lump sum payout in the case of an accident and, secondly, Gordon’s timing was just wrong. He should have waited a few more months before having his accident, as he would then have been granted lifetime healthcare coverage through a new government policy.
And it gets worse. A disability is not just a disability, it seems, but a causational caste system and a hotbed of inequality. Ironically, Kelly has discovered that, because she was born with her condition, she simply doesn’t fill the criteria for many of the services that are available to her husband.
It’s ironic that people living in NSW should count themselves as ‘lucky’ if they become disabled as a result of a car accident. Depending on which Australian state or territory you live in and how you acquired your disability, your entitlement to disability support services will differ. At the moment in NSW, if you acquire a disability at home through injury, accident or illness, there is no entitlement to support, no matter how much your disability expenses skyrocket; and there is no private insurance to cover the costs incurred of a baby being born with a severe disability.
‘Now that my condition is getting worse, every time I go to the GP they are referring me onto a specialist and we have to pay for that,’ says Kelly. ‘I might have to see five or six specialists five or six times a year. It gets really expensive, so you just don’t go. You don’t get things treated.’
Because Gordon falls into a different disability category, he has been offered many more services and assistance and healthcare options, and Kelly says there are times when she has wondered why she can’t access the same. In the Cox household the inconsistencies are glaringly obvious. Even so, the shortfall in what is needed even for Gordon means that he and Kelly still struggle.
Currently Gordon needs surgery on his elbow. Because of the nature of the public health system, Gordon is on a list and when his turn comes he will get the operation. His doctors tell him in the mean time he needs to rest the elbow. The thing is, it turns out an elbow is a very important thing if you want to do stuff like lift the weight of yourself in and out of the bed, the car, the couch, the shower – or drive or do housework.
Yet Gordon and Kelly are so far from playing victims in this situation it’s just not funny. Both are gifted with strong, healthy, active and intelligent minds and sharp senses of humour. They are ready and willing but just not always able to be supportive members of their community. They want to work, they want to look after their own physical and fiscal needs but they need some help getting there.
The couple is very proactive in managing their lives and the various treatments and needs of their conditions. But their days are spent wading through a quagmire of health care policies, packages and programs to the point that they are forced to spend many hours ‘shopping’ between government-sanctioned service providers for the best ‘deal’.
Lord help you if you end up with a package that doesn’t cover what you need. That’s just too bad. It’s not a matter of simply needing this, this or that, you have to find the package that suits you the best and do without what it doesn’t provide. It’s a bit like planning a European holiday, just not such fun. This is not about a choice of toast and juice or the continental breakfast. This is about life, existing from day to day. The Coxes spend much of their time simply managing their disabilities. Hopefully things are about to change.
The Australian government is currently working with the states and territories on the key design issues for the launch of a National Disability Insurance Scheme (NDIS). The aim is to ensure that people with disability will have a clear pathway to access the care and support they need, when they need it, regardless of where they live or how they acquire their disability.
Gordon says that a national system would – if nothing else – save them time. ‘There is a problem with borders,’ says Gordon.
‘We are nine hours from Sydney. We are only two hours from Brisbane, but Brisbane is in Queensland and that’s not covered by New South Wales Health,’ he adds.
Gordon feels the concept of the NDIS is all well and good but it needs to work properly to serve its intended purpose.
‘The NDIS needs to create ease of accessibility. If we can’t access anything from the NDIS without going through all the red tape, through the numerous lines of communications, through case managers then this, then this, then this, just to get something done, then it’s going to be no easier that what we are going through now.’
The government website says that the NDIS will be a fundamental change to how disability care and support is delivered. It will not be just a few tweaks to the current system. Over the coming months, it will release information about the key design issues.
‘We understand that the experience of living with disability is critical to designing the best system for care and support and that people with disability, their families and carers must be at the centre of this reform.’
For now the Coxes sit housebound and wait. They can’t afford to have Gordon’s surgery in the private system, they can’t afford to have their car fixed and Gordon can’t drive it anyway as his elbow injury prohibits his using the semi-modified vehicle. These factors mean that Gordon and Kelly can’t work, something they are both more than willing to do, but it’s just not possible without a car or Gordon’s surgery. It becomes a tedious and frustrating Catch 22.
On another level the Coxes would just like to be able to go out as a family in a way that doesn’t make the prospect of any trip a complicated series of transfers and wheelchair dismantles and rebuilds that turn every venture out of the driveway into military exercise in logistics.
And what would Liam like? ‘I’d just like to go to the beach with mum and dad.’