If you think the disability insurance scheme is not your problem, think again
'A new motorised wheelchair for your child will cost more than a new small car, and you’d need a van with a wheelchair lift to transport your child.' Photo: Ken Robertson
AT THE moment there is no automatic right of access to disability support across the board in this country. If your child fell out of a tree tomorrow and sustained serious brain damage, what sort of help would you expect and hope for?
He or she would be entitled to care in a public hospital, but once discharged, you'd be largely on your own.
In your distress and confusion you would have to navigate a system so complicated that the Productivity Commission uses the new word ''confusopoly'', borrowed from a participant's contribution to its inquiry, to describe it. You might wait for any level of physio or occupational or speech therapy for a year or more, and once receiving it will only get minimal amounts. The optimal time to intervene to get the best outcome for your child may well have passed by then.
A new motorised wheelchair for your child will cost more than a new small car, and you'd need a van with a wheelchair lift to transport your child. Then you'd need a shower commode and a standing frame and maybe a walker; a communication device will set you back the price of five or so laptops. You'll need to modify your house; bathroom, doorways, ramp any steps, or move to a bigger, more accessible (and probably much more expensive) house. Government schemes only cover a fraction of these costs after months and years on a waiting list, and the bill is climbing towards hundreds and thousands of dollars.
This is at a time when you've probably had to reduce worked hours because of your caring role. Or lost your job because four weeks of leave a year doesn't go near covering school holidays. Your marriage is likely to suffer or break down, with higher rates of breakdown among carers than the general community. If you are a female carer, you have a 50 per cent chance of suffering a major depressive episode (or about 33 per cent for male carers).
You need respite, but respite hours don't go very far, in fact you can probably forget respite hours at the moment in Victoria - although the state government has trumpeted new support packages on a number of occasions, a lot of these are not actually funded, so you are still left begging for basic help. Most times your package won't be fully funded on an ongoing basis until there is some serious crisis - death, divorce or serious illness of yourself or partner.
Or maybe this will all become too hard and like many others, you will abandon your child one day at overnight respite, then spend the rest of your life dealing with the agony and trauma of this, while your child no longer has someone who loves and knows them to advocate for them and be involved in a reasonable transition to supported accommodation. Or you get old still caring for your adult child, and worry that when you're gone there will be nothing appropriate for them.
But hang on, maybe your child will fall out of that tree in front of an oncoming car, receiving the same level of brain damage, but now he or she is covered under the Transport Accident Commission in Victoria for reasonable amounts of all of the above. Some in our society can get access to reasonable disability support, but it depends on the lottery of how the disability was acquired and in which part of the country. Nothing to do with fairness, efficiency or even budget surpluses.
There is no question that disability imposes huge costs on those affected and their families and carers. Society also bears the cost of lost employment and potential, and the consequences of family breakdown.
There is also the inefficiency of transferred costs to other areas of government of increased mental and physical health problems, and the ludicrousness of, for example, a case referred to in the Productivity Commission's report into disability care and support, where one arm of government spent $300,000 on keeping a young adult in a rehabilitation centre, because another arm of government would not give $15,000 for bathroom renovations so he could go home.
Add all this up and it is clear that disability support is already being paid for and the costs are being borne enormously and disproportionately by the most vulnerable and least able to pay in our community. All these costs must be counted in any decent and civilised country.
If you lose your job tomorrow you have as-a-right access to unemployment benefits, retraining programs and so on. Reach a certain age with limited income and assets, you'll get the pension. Go to a hospital with snakebite and you will be treated.
There won't be a check as to the current budget bottom line and the message that we'd like to treat you, but it is just too expensive. A civilised society recognises the need to support people at their most vulnerable and also recognises the benefits of doing so. The commission's report notes that the ''benefits of the proposed national disability insurance scheme would significantly outweigh the costs''.
Disability is expensive and it is costing our society. The only difference is that today the costs fall hugely on a few, rather than being spread thinly over everyone. And remember, disability can touch anyone. So, if you think this is not your problem, then cross your fingers and hope next time you or your partner gets pregnant, and keep your child out of that tree.
Elizabeth Manning is an economist at Deakin University, and the mother of a 15-year-old daughter with cerebral palsy.