In Australia there is this marvellous political construct called COAG – the Council of Australian Governments. It meets once or twice a year and Wednesday’s gathering was to advance the National Disability Insurance Scheme.
In brief the NDIS is about establishing a Medicare type scheme which would provide a secure and consistent pool of funds for services and supports to the disabled rather than the existing system where there is an annual budget allocation which is never enough and always runs out.
It reframes support to one of investment rather than one of charity.
It places timely intervention and appropriate aids, equipment, training and development as equal investment in an individual’s capacity rather than welfare.
It recognises that disability is for a lifetime. It looks not just at the individual’s needs now but over their lifetime. For example, you’re profoundly disabled? So you’ll need a wheelchair, ramps, a modified vehicle, a hoist for getting in and out of bed, on and off the toilet, in and out of the shower, on and off the lounge. Right, let’s get that sorted as you are a human being with rights and to not have those things is not acceptable in a civilised society. OH, you’re now OLDER so you’ll need a bigger wheelchair, your transport needs may have changed, an adult hoist/bed etc – let’s update your equipment.
At the moment all of that is in the hands of the family. And if you miss this year’s funding allocation for a bed that can be raised or lowered? Well, you can raise your own funds, go to a charity or just wait.
And you can do that every single time your child grows out of their equipment.
Perhaps you have a highly autistic child or maybe you’re like my son Oscar with a moderate intellectual disability but relatively mobile and highly social? Well, you need time with your peers and activities just like any other person your age. On top of that, your unique circumstances mean your mum or dad or carer need some time out. Some time to recharge the batteries and just live for a few hours without the pressures of being the whole world to an individual dependent on you for just the most basic of human functions.
Well you can now ring around, ask others, chance upon some respite services in your area but they only do an intake once a year so your name can go on a wait list for the following year but don’t hold your breath because there’s a big cohort of kids moving up from the primary school group to the high school group and there won’t be any spots unless someone moves out of area.
And on and on it goes.
Having a disability in Australia makes you a second class citizen. FOUR million Australians have a disability. That’s roughly the population of Melbourne. Then there are the 2.6 million Australians who care for family members with a disability. We’re now looking at the population of Victoria.