Sunday, 31 August 2014

Smashing Barriers WITHIN Disability

Yes, you read that right....WITHIN disability. 

We always hear about people with disabilities needing to break down the barriers with people without disabilities.

I believe, that whilst this is extremely important, we actually need to find a way to get the barriers broken down within the disability services.

As a mum of a 23yo daughter with Down syndrome, nothing frustrates me more than trying to operate as a complete unit with a multiple of services who have :

a) never heard of each other 
b) don't trust each other 
c) aren't allowed to talk to each other.

This means the clients get drip fed a little bit of information or service from one, then have to go seek (because services have never heard of each other), another service to get a little more information...and on it goes. Trust me when I say...Chloe is not the hardest job...dealing with the services has almost sent me to drink!!!!

I actually try to use an advocate to navigate the mazes.

My question is WHY!!!!!

Why don't services realize a client is not the sum of one thing, but made up of many layers and needs (as everyone is) and be able to at least have a place to directly lead the client to if they can't provide it??

Do they not realize how much money could be saved and OH MY GOD, filtered to the clients if they decided to start trusting each other and pooling their resources!

Imagine if there was a network info website where services could log into to hummm, let me a program for medical forms...Yes, just one universal program, instead of creating one for every service...imagine being able to download a universal form for day respite...the list goes on.

Because this practice is the bane of every carer/clients lives and because services are going to need to start rethinking the way they operate with the introduction of NDIS in Australia, and because I have been taught if I am going to complain about something, I'd best be prepared to be a part of the change, I have decided to host a forum for service providers in the Eastern Region Melbourne to start  breaking down the barriers between each other.

If any service providers in this region are interested, please contact me at: If any other Regions (even Regional) are interested in me hosting this Forum in your Area, please contact me on the above email.

Together we can make a huge difference to families/clients with disability, 
SO lets start!!!!!

Dedicated mum, Inspirational Journey

I am NOT Down syndrome.

Since the Baby Gammy incident (the little baby with Down syndrome left in Thailand by its parents after being told about the babies Down syndrome, (pictured)

I have constantly been hearing about the Down syndrome baby. What is that??? It sound like a new species or something...and yes we are saying this In 2014...the 21st century!

With all the amazing technology we have at our fingertips, the media are STILL unable to get the terminology correct when it comes to people who HAVE Down syndrome.
Yes, you heard me, PEOPLE WHO HAVE DOWN SYNDROME....
not Down syndrome people. 

We don't use this terminology for any other things people have...
I have never heard; " Oh here comes Johnnie, the cancer baby' or there's Jill, the Fragile X child'...No, it is always person first, then their affliction or whatever.

People with Down syndrome have 47 chromosomes, as opposed to people who don't have Down syndrome. They have 46 chromosomes. The extra chromosome is chromosome 21 (the smallest of the bunch). This and ONLY this makes Down syndrome.
Now here's the big revelation....they still have the other 46 chromosomes....just like you and me.

AND those other 46 chromosomes means people with Ds are going to be a lot like their famlies...Yes, they are not the sum of their extra chromosome 21!!!
They are made up of many levels and layers, just like everyone else....
My Miss Chloe has so much of my own personality and looks like her Nanna and used to look like her big sis.

Having Down syndrome is nothing to be is only an extra chromosome and the smallest of the bunch at that!!!

So everyone out there needs to take a chill pill and relax. Get to know a person with Ds...really get to know them and you will find a person not a syndrome.

Catch me tomorrow morning on 2PK (Parkes) at 9.15am or ABC Ballarat at 9.40am

Dedicated mum, Inspirational Journey

Dawkins and Disability

Who would have known, that one ignorant post from a narrow minded man, would have turned my world upside down in a week.

It all started when I like most of the world, was outraged after seeing the disgusting post from Richard Dawkins on how a mother should abort a child if they know it has the condition known as Down syndrome. Not only is this the most narrow minded and elitist sounding response i've ever heard, but it is also incredibly wrong, dead wrong. To have that cut and dry a response is verging on a practice we only saw in the darkest hours of our existence. As this comment consumed me, I worked on a way to turn this around, to grab that loud hailer and let the world know MY thoughts on this all or nothing approach. After teaming up with Ross from Mediakey, witihn 24 hours we were off. Talk about strap yourself in! radio interview after radio interview, then a TV appearance.

Sue and Chloe appearing on Studio 10

 Awesome experience with some great minded people, who really helped me to spread the word that having an extra chromosome is not a death sentence, but merely a different journey in life. 

I will be appearing on more radio and TV in the next few days, sharing the same message.
So if you happen to hear it, please spread the word.

Also if you haven't read my book, get yourself a copy from here buy the book