Heads or tails? Nobody wins the disability lottery
Spin the wheel, throw the coins, double down… This week looks to have been pretty big for people with disabilities.
Monday marked day one of the first National Disability and Carer Congress (NDCC), with more than 1000 interested folk paying to hear about how lousy their lives are now, and how much better a National Disability Insurance Scheme will be for everyone.
On Tuesday we heard that not only had the Victorian Government pledged a $210 million boost to disability-related education and supported accommodation places, but also that the PM (who declined to speak at the NDCC and sent Shorten instead) has announced, while kneeling at the desks of children with special needs at a local primary school, an extra $200 million to support kids with disabilities in schools.
It’s as exciting as winning 20 bucks on a scratchie ticket. You love it that you won, but you were really hoping for the $50,000.
Of course, the Opposition immediately screamed the predictable “No bloody detail, not enough money, and why didn’t they just use our idea?”.
They have a point (or two, or three) – we have very little idea how or where this $200 million is going to be spent. I read about occupational and speech therapy and some specialised equipment to help kids communicate. And apparently the money will go to both government and private schools.
Will they give it to state governments to spend? Or will they create yet another layer of bureaucracy to administer the money? How will they decide who gets these therapies, and where will they find the therapists? The link they provided on their press release for more information went nowhere.
I think I smell a house with a burning roof space. But let’s spin the wheel and see what we get.
There’s a Federal Government package that grants around $12,000 to spend on therapy and so on before a child with an autism diagnosis turns seven.
Honouring an election pledge, a similar package, the “Better Start” initiative, will be available from July for young children with a range of diagnoses. Very specific diagnoses.
And while cerebral palsy can have a huge impact, some children with this diagnosis may only require physiotherapy and have no other serious support needs.
Children with Rett syndrome or Cris du chat syndrome, however, which universally impact children in pretty severe ways are simply not “on the list”. (What’s the bet the numbers of children with cerebral palsy escalate significantly from July onwards?).
It’s the disability lottery. Again.
Heads or tails? Heads says your kid is injured in a car crash and tails says your kid is born with a rare congenital disorder. Neither kid can walk, both need a tube to be fed, both are barely verbal, and neither uses a toilet.
While the heads are reeling from this tragic accident, their house and vehicle modifications, therapy, respite, wheelchair and other equipment will all be provided with barely any wait.
Score a tails, however, and you might lose your house because one parent will have to give up their job, and both will damage their own backs while waiting for a hoist.
Your kid won’t get any therapies, and won’t be able to go to Grandma’s for Christmas lunch because all the accessible taxis will be booked out, and you can’t afford a wheelchair van.
If you’re really unlucky, like Sally Richards, who spoke at the conference, one parent will suicide, with the stress of it all contributing to a grim toll.
So, rather than look at what people with disabilities need to live decent lives, our governments continue to use bandaid measures – hoping that their ill-considered, politically safe backslapping announcements will appease a sector full of grumpy, whiny people who often drool and make us feel uncomfortable.
The choir at the conference should have been shouting from the rooftops. “What do we want?” AN NDIS. “When do we want it?” NOW, but all that Rhonda Galbally AO could muster was an exhausted, demoralised, pitiful squeak from a group literally sick and tired of reports, reviews, drafts and inequities.
I’m sure we all wanted to be enthused, but we just couldn’t do it.
The government that commits an extra $6.3 billion per annum to supporting people with disabilities (and that’s one in five of us) will no doubt be rolling the die of public opinion.
The PM will need more than a few disabled schoolkids to use as wallpaper to make her look good, but a few years later, we’ll all wonder why the hell it took so long to do it.
Just like Medicare for a 20 year old today, we’ll wonder what all the fuss was about. And while people with a disability won’t have won the jackpot, there’ll be little need for us to gamble with our lives any longer.
Read all about it
Up to the minute Twitter chatter
The latest and greatest
Good morning Punchers. After four years of excellent fun and great conversation, this is the final post…
I have had some close calls, one that involved what looked to me like an AK47 pointed my way, followed…
In a world in which there are still people who subscribe to the vile notion that certain victims of sexual…