What the NDIS means to Australian mothers

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.

Now wrap your head around this cold hard fact:

ALMOST HALF OF THOSE WITH A DISABILITY IN AUSTRALIA LIVE IN POVERTY OR VERY CLOSE TO IT.

In Australia if you are born with a disability or become disabled at some stage during your life you will be pushed to the periphery of its society. You will be forced to look for charity for basic needs in coping with that disability. You will, in light of all this, be punished for being disabled.

People with a disability and their families currently pay a price for disability in the form of social and economic exclusion and a massive lack of choices.

Way to go Australia.

The Productivity Commission report into establishing an NDIS made the very salient point that yes, the NDIS will cost a lot BUT – the overall economic benefits are likely to exceed scheme costs by facilitating economic and social participation by people with a disability and those caring for them.

Imagine that – your provide the additional support to those who need it and low and behold they become functioning members of the community rather than a drain on it. GO FIGURE.

Ironically as state governments cried poor in failing to support and instigate NDIS trials at COAG on Wednesday, they are staring down the barrel of an economic crisis in the disability sector. The number of people with a disability is rising, someone is diagnosed with a disability every 30 minutes in Australia, while the number of people willing and able to offer unpaid support is falling. The cost of that? To governments? MASSIVE.

So they have a choice. They can wear the massive costs of having a cohort of their population desperately needing resources, not getting them and therefore not able to function in the society OR they can chip in, develop a scheme that empowers and enables that cohort to then have those people able to contribute.

Wednesday saw an opportunity for our elected leaders to stand up and say, this is important, this must happen, let’s make it happen. Instead they played politics and through their actions – or lack thereof – showed their true colours.

I have moved through incredulity and anger and am now just sad. I despair, truly I do.

This post first appeared on allconsuming.com.au here and has been republished with full permission

Kim Berry is a freelance writer who has worked in communications roles for more than 15 years. You should follow her blog here and catch up with her on Twitter here

Have you had to look after a child with a disability? How are you coping?