There’s lots about autism to be angry about, but funding models isn’t one of them

Holly Hughes

Note: given the strong pro-government stance in this article, Ms Hughes should have also disclosed her affiliation with the Liberal Party - see http://www.afr.com/brand/rear-window/election-2016-connie-fierravantiwel...

The National Disability Insurance Scheme is a game changer for people with a disability and everyone who loves and supports them. Families will finally have effective choice and control over who provides the services that they actually want and need.

 

Get mad, in the right places. Hollie Hughes and her son Fred.

This comes after a period of limited funding, where a paternalistic attitude towards those with a disability meant you got what you were given and you ought to be grateful for it.

We have recently heard disability advocates complain about the NDIS funding being tied to some budget cuts. There have been accusations that the Turnbull Government is using it as a political football.

Well, I’m calling it as rubbish. This rhetoric is both naive and damaging, leading the public to feel politicians are playing politics with our most vulnerable citizens. Total BS!

Whether those in the disability community understand it or not, the NDIS needs to be funded. The money needs to be found so this life changing initiative currently being rolled out can continue.

Early intervention is key. Hollie Hughes and her son, Fred. (Pic: Supplied)

I’m a small government person, so a tax-and-spend mentality around the NDIS doesn’t sit well with me. The government needs to find the savings somewhere and complaining about every effort to find them is counter-productive and not directing our anger to the right place.

I’m a mum of a child with autism. We are five years into our “diagnosed” journey. Prior to the NDIS, we had a few years in the no-funding-at-all space, which was preceded by the Helping Children with Autism package that was introduced by the Howard Government and received no increase at all under the next Labor Government after they finally adopted the policy in 2008.

The HCWA package is $12,000 over two years. Our therapy costs exceeded that $6000 per year allowance by more than 1000 per cent. This was not extra cash we had lying around — every investment, dollar and quite honestly, credit card we could get our hands on was used to ensure our son had access to the government’s own best practice recommended therapy, Applied Behaviour Analysis.

We’re still paying for it.

To make things a little more challenging we are located in far northwest NSW. I had to give up work to focus on running the program that included monthly visits to Sydney and live-in therapists from around the world, as there was never a response from the ads we constantly ran in the local area. Thank goodness for Gumtree and the influx of young workers from Europe at the time.

And we were a family who received HCWA. Due to poor and inconsistent diagnostic tools, many families never received a diagnosis until their child was older than seven, which is too old for HCWA, meaning they received no funding at all.

And if you had a child diagnosed pre 2007, there was nothing. No funding at all. You were at the mercy of providers who delivered programs they felt you needed, not what families actually required. Nothing was personalised for a child or their family’s needs. If you actually wanted best practice therapy, you paid for it yourself.

I know plenty of families that did just that. None came out of it in great financial shape, and some marriages didn’t last the distance. But the difference it made to their child, I know they’d do it all again, 10 times over.

One size doesn’t fit all. Hollie Hughes’ son Fred, like all autistic children, needs individualised therapy, not squabbles about NDIS funding. (Pic: Supplied)

It’s time to admit we do autism badly in Australia — we don’t have any university courses focused on ABA, or even delivering effective multidisciplinary programs — speech, OT, psychology and early intervention. We don’t value and recognise best practice, or provide it in any way through a public program — all providers are private. The recommended minimum of 20 hours per week of one-on-one therapy is never admitted publicly, as there is absolutely nowhere near that available in the public arena.

The medical profession mollycoddle parents, telling them it’s lifelong, never telling them the hard truth or providing any optimism. Parents also need to understand that they will never be able to drop their children at therapy and have them “fixed”. Teaching our kids requires a 24/7 effort by everyone. Consistency is key.

Autism is the perfect disability for an insurance scheme like the NDIS. Effective, intensive, early intervention will produce outcomes but unfortunately for the bureaucrats it’s not a put in X and get Y scenario.

Every child on the autism spectrum is different and will have a different outcome but with the right therapy all will have their worlds opened up. Communication tools can be put in place if the child is non-verbal, children at the more severe end of the spectrum can be toilet trained — and never underestimate the difference that makes to a family.

Kids attend mainstream school with nowhere near the assistance they need in the early years, not only academically, but in developing the skills for appropriate social interactions and the peer-to-peer relationships our kids struggle with. There are private ABA schools, again at a great financial cost to families. If you require public special needs education, a one-size-fits-all approach applies. And then there’s the allegedly autism specific schools where kids have been put in boxes and cages.

So, autism and disability advocates, if you want to be angry, get angry about that. Demand better university training for our teachers. Demand best practice therapy actually be available and the pseudoscience rubbish called out for what it is.

Insist on a nationally consistent diagnostic tool, so that there is a standard diagnosis, where the test can be reapplied after effective early intervention so we can start to make truly informed decisions. Attach the additional funding that schools attract to the child themselves, giving parents choice over where they send their children to school.

Rural families in particular do it extra tough in trying to access therapy. The travel puts an extra strain on families. Demand better internet for those families so Skype therapy sessions are a possibility rather than a pipe dream.

There’s plenty to get angry about, but confected outrage over finding the funding for the NDIS which will change all our lives, and the community, for the better, is a waste of everybody’s time.

Hollie Hughes is the chair of Country Autism Network and the mother of an autistic child.

from http://www.heraldsun.com.au/rendezview/theres-lots-about-autism-to-be-an...