New Favourite

Everybody Counts has put out a video about the NDIS. Watch it.

This New Favourite is a little different from the normal musical ones, but a must watch all the same.

The budget is around the corner. There’s going to be a $12bn deficit – or something like that. Ructions are growing about how something like the National Disability Insurance Scheme will be funded.

As disability advocated and all-round legend Stella Young said in a piece on The Punch today, how insulting.

This isn’t about propping up a failing industry or pouring more good money after bad into a flawed and failing asylum seeker policy – situations where money is simply found, no questions asked.

I’m so done with people being self-centred and scared. Let’s be brave, let’s be daring, let’s do what is right.

 

Quite something

Today the Australian Parliament passed a bill that turns on its head the way this country has treated people with a disability. The National Disability Insurance Scheme (NDIS) turns our current system on its head, from one of ‘please Sir, can I have some more’ welfare to one which recognises them for what they are, people. It makes a vital change in the whole mentality around disability services by turning it to one of support being an investment not charity.

It will be a medicare type scheme providing a secure and consistent pool of funds for services and support to people with a disability.

Many people think that already exists.

No, what exists is a yearly allocation of funds. Those funds run out half way through the year? No matter, go onto the waiting list. But oh, yes there’s quite a few before you so you might not be successful next year either. But maybe the year after that!

That scenario was told to me at an early information session on the NDIS by a mother trying to secure an automated bed for her profoundly disabled adult son. Those beds cost several thousands of dollars. When she queried what she was meant to do the service suggested she approach a charity or maybe hold a fund-raiser. For her son’s bed.

The NDIS has been a concept kicked around our hallowed halls for 40 years. Something people have given lip service to but not much more.

I do not care what your political leaning, I do.not.care. but this Government is the first to actually action it. The first to say this is important, to say to the four million or so Australians who have a disability that they matter.

To grasp the scale of that, those four million people equates roughly to the population of Melbourne. Then consider the 2.6 million Australians who care for family members with a disability. Now you’ve got the population of Victoria.

As soon as you hear someone start to say how great it is but gee, how we can fund this, how we can pay for it I want you to tell them you’re talking about the population of Victoria. You’re going to turn your back on an entire State?

I want you to tell them that ALMOST HALF of people living with a disability in Australia live in poverty or very close to it.

Tell them the median income of someone with a disability is HALF that of someone without a disability and that even though the number of people with a disability grows, participation in the workforce for the sector has remained unchanged since 2003.

I want you to tell them that they are witnessing something of magnitude, something other countries will look to, a true moment in time for our political and social history.

It is the sign of a civilised society.

If we need to make some hard calls to make it work then that is what will be done.

Not because it’s nice, not because it makes us feel good, but because this is about ensuring no one gets left behind. That no matter what dodgy chromosome you were born with, or whether you can hear, or see, or walk or talk, YOU MATTER.

Now the scheme won’t cover all of us. It is designed to support the most severely disabled among us. I actually wonder if Oscar will be eligible but that is of little concern because there are so so many who do.

At the end of last year I spoke at length with Senator Jan McLucas, Parliamentary Secretary to the Prime Minister and for Disability and Carers. She’s been working on disability matters since 2004 when a raft of recommendations were made after a Senate Enquiry into disability services but even then she said they knew they were “tinkering at the edges”.

The NDIS looks at the individual and their needs over a lifetime. It gives families one point of contact and while it doesn’t sound like much it means families only need to provide the history once. It’s about investing in the individual. “We want families to stay strong, stay together and be supported as they want to be supported,” she said.

Some states – WA and Tasmania – actually have a model along those lines. Jog it in WA and Tas!

For the rest of us it will take some time with pilot programs starting in five states to get it underway. One of the most exciting aspects Jan told me about the scheme is that the system will be one that looks at the individual’s needs at that point in time. At the moment you have to re-invent the wheel at every milestone.

“If you’re a 6 month old child with Downs Syndrome the support is essentially to the mum and dad. Totally different to a 16 year old with Downs and then extrapolate that to when they’re 26. The focus on the person will be much more acute but we’ll also be viewing the person in their environment,” she said.

I hope people not impacted by a disability grasp the gravity of that.

ABC story here.

ONWARD!

 

 

NDIS – time to lead

In Australia there is this marvellous political construct called COAG – the Council of Australian Governments. It’s meant to promote policy reforms which are “of national significance or need coordinated action by all Australian governments”. In reality it is a stoush. A chance for state and territory premiers and chiefs to prance and preen and belly-ache about lack of money, favouritism or lack thereof and so on and so forth. It meets once or twice a year and yesterday’s gathering was to advance the National Disabilitpy Insurance Scheme. This is a great 10 point document to tell you what the NDIS is and why we need it.

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 10/15/20/40/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 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 millions 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 yesterday, 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.

Yesterday there was such 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.

 

Onward.