Category Archives: disability

New Favourite

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!

 

 


Team Oscar: the year in review

I don’t think I could exaggerate what a tough start it was to 2012 for Oscar. Watching New Years Eve fireworks from a Mona Vale Hospital bed was not on anyone’s agenda and the fact we were back there for 12 days in April/May was a curve ball that took both of us months to recover from.

Oscar

Do you remember the April/May stay? It was really the beginning of my downfall into the abyss that is chronic depression and anxiety. I keep going back to those posts because now? A mere seven months later? I am not there anymore and indeed am so far from that place I need to keep checking it ever happened at all.

But this year has been challenging. Parenting a 14 year old with an intellectual disability is HARD. There’s anger and energy – physical, emotional – that needs to be channelled somewhere, SOMEHOW, but as to where and how is something every parent of a teenager with a disability wrestles with ever.single.day.

At Oscar’s School of Awesome presentation day last week the Principal spoke of exactly that. How once these kids hit high school you basically throw out all the strategies you used in early intervention and primary. It is still about communication and relating to others and all the rest but as a teenager? There is so much more at stake. Friendships come centre stage, how do you negotiate those relationships as well as all the hormones. There is violence and aggression. My GOD when Oscar loses it… the little guys are SCARED.

I mostly handle it badly. I mean, how do you treat someone like a teenager when they are essentially still a kid? How can I give him responsibility and rights and privileges when he can’t/won’t dry himself properly out of the shower. When every.single.night you have to oversee the going to bed routine or face a wet bed in the morning? When he can’t do up his school shorts or tie his laces?

I have had a lot of quiet despair this year about being Oscar’s mum. Knowing he’s at a school which comprehensively understands that makes it all a little easier.

Last weekend Oscar went to the Ignation Children’s Holiday Camp at Riverview. Four days, 30 kids with a physical or intellectual disability aged between 5 to 15. Free to families and sponsored by the Sony Foundation. Sometimes things come your way that restore your belief in the human condition to be nice to each other.

The most remarkable and heart-exploding part of all this is that students who have just finished Year 12 volunteer to be a part of it and are buddied with one of the kids for their entire stay. I’m presuming they’d already gone off and been carefree foolish teenagers on schoolies but I suspect these young adults are a bit of a special breed. Let’s say hello to Tom:

Oscar and Tom

Oscar and Tom

Tom just happened to be Head Boy at Riverview. He wants to be a doctor. Our HSC (school leaving results) came out today and he was in the honour’s list for five subjects. Yeah, Tom is probably going to be cure cancer, become Prime Minister and establish world peace. (Can you imagine being his parents. Dear GOD if they are not so proud of him their hearts explode daily… although I do wonder if he puts his dirty washing in the laundry and is, at least on occasion, a complete shit to his little brother.)

For four days he and Oscar hung out. They went on a ferry, which Oscar got to steer. They went to the aquarium, seemed to swim for about 10 hours a day, went for a ride on a Harley Davidson, dressed up as Batman for a disco and myriad other things. They made it to the nightly news:

 

Oscar came home with a scrapbook Tom had compiled for him which ended in a letter he wrote to us. Dude is SO going to be a doctor with THAT handwriting. This is a snippet:

I have discovered much about myself over the last few days and in Oscar I have seen the raw beauty of the human spirit.

From the roughest and most challenging of starts, 2012 came good.

 

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.


A good day. A very good day.

This morning the boys were being suitably arduous and tiring and exasperating and any other adjective which says fucking annoying in a polite way.

Then the neighbour called over the fence that all t.h.r.e.e. of the guinea pigs were in HER yard, as opposed to the most glorified cage known to man. Sure enough, there they all were, mowing her lawn quite nicely. So there was me and Felix (and then Oscar, Jasper and Grover) clamboring through their tick-infested rainforest inspired garden trying to catch some tailless rats our precious pets.

They’re slippery little suckers let me tell you. We caught Harriet but had to admit defeat on Cocoa and Matilda as they had vanished and we had visitors coming over.

The visitors arrived and a lovely morning was had, except that small section when all their children were playing beautifully outside while my four were inside fighting like feral cats. Seriously, Grover was attacking Oscar on the lounge while Felix and Jasper were wrestling on the kitchen floor. Class.E.

These are the same friends who we went to Putt Putt Golf with last week which ended with Jasper and Grover having an EPIC meltdown because Felix’s best friend had bought him a slushie and I refused to buy one for them. Well actually, it didn’t end there. It ended with me SMACKING Grover in the doorway of the Pro-Shop, dragging him to the car by one arm and then tearing shreds off both of them for embarrassing me so thoroughly in public and how selfish they were and so on and so forth. Let’s just say I wasn’t using my quiet yelling whisper voice.

What can I say, I do white trash well.

Thank GOD these friends are friends with whom I can compare rage ratings.

Anyway, they all departed and I started getting some emails, texts and facebook messages from friends doing the whole ‘OMG YOU WON’ caper. And indeed I did.

Thank you one and all for your votes for me – I will be attending the Disability & Carers Congress in Melbourne as a ‘Social Media Champion’ for the Every Australian Counts campaign.

This means so much to me – it’s been a while since I was involved at this kind of level in disability services. When Oscar was wee I was on the committee for the Association of Genetic Support of Australasia and was heavily involved in securing funding for a support service we used for Oscar about six years ago so it’s been a while between drinks.

Then I had to knuckle down and get some stuff written for a request I’d received.

Then I took some deep breaths, downed a couple of imaginary valium and took all four boys to the Mall to find some winter clothes for Oscar and Felix.

When we arrived I did the standard ‘we’re at the shops’ pep talk. There are other people. BE GOOD. There’s a quiz – what does ‘be good’ mean? To which they all reply in various states of resignation enthusiasm ‘don’t run’, ‘don’t yell’, ‘don’t fight’, ‘don’t touch ANYTHING’, ‘NO RUNNING’, ‘stay close’. And so on and so forth.

It stands to reason then that as soon as the doors to Target swoosh open the two younger ones tear off into the shops as if they’re horses leaving the gate and the decree is given, ‘let the games begin’!

Between eleventy gagillion COME HEREs and STOP RUNNING and SO HELP MEs there was schlepping to the other side of the store to for Felix to try on some jeans. Hey ladies, trying on jeans on a boy is just as soul destroying as trying them on yourself!

Grover and Jasper were having an awesome game of locking themselves in a changeroom, one of them dragging themselves out under the door then banging on it with great hilarity while Oscar flapped and did his ear-piercing squeal and O.M.G. someone SHOOT ME NOW.

There were some more COME HEREs and STOP RUNNINGs and then a yelp. As Jasper slammed into a woman WITH A LIMP. I swear to GOD it now rates as one of my best I TOLD YOU SO mothering stories of all time.

Then there was a brief dalliance in the boys clothing section where I laughed at myself for even thinking anything in that department would be more than a leg warmer on the bigger boys, so back we went to the men’s section, found another pair of jeans we hadn’t seen, went and tried them on and HOOLEY DOOLEY success.

So, we’re heading for the check-outs when I pull my phone out thinking Chef may well have been ringing me to find us (joining us there as he was after work) when I see these tweet messages expressing congratulations and general excitement and more Oh Em Gees.

Then my phone rings and there is much squeeing (granted I was trying to whisper squee because by now – NOT A WORD OF A LIE – the security guard was following us) and for reals folks, I am a finalist in the Sydney Writers’ Centre Best Australian Blogs 2011 Competition in the Lifestyle/Personal category.

How FRIGGIN’ awesome is that. I’m a LIFESTYLE people, a LIFESTYLE.

Needless to say, you can still vote for me in the  People’s Choice category – because clearly my ego needs more stroking.

And then, as we’re all licking our collective wounds of virtually being kicked out of Target my phone rings and it’s my mother-in-law.

Something has been going on folks and I haven’t told you about it because it’s been early days and not really my story to tell.

But at my MIL’s annual mammogram they found a lump. That lump was malignant. That lump was lumpectomied last week. That lump was 10mm bigger than the mammogram had shown it to be. It was not there last year. They thought that lump was a particular kind of cancerous lump. The worst most aggressive kind. It was not there last year and this year it was already 16mm in size.

The proposed treatment plan was confronting. Three months of chemo, TWELVE months of this other treatment that could damage her heart and the value of which (and the best duration) were still not established and THEN radiology. We were all reeling.

Then the call came in today with the final blood test results on The Lump which were confirming – or not – that it was the worst, most aggressive kind. Negative. The Lump – while still a cancerous bastard of a lump – is not the worst, most aggressive kind.  Chemo still stands, as does the radiology but that other nasty 12 month component is no longer on the table. Her surgeon has told her she is the poster girl for early detection, that she will make a full recovery.

And that, my dear beautiful readers, is a good day.

 

Onward.

 

Related Posts Plugin for WordPress, Blogger...