word!

Click the image to head to my husband’s blog to see the latest word from Kurt Fearnley on the NDIS in Australia.

Shawn’s new blog, Disability and Media Matters, discusses and highlights the representation of people with disability in the Australian news media, and, importantly, showcases the reaction and perception of people with disability to that representation.

It highlights stories that feature people with disability, and the issues that impact their lives, and their families.

He’s a pretty impressive character, my husband, I think you’ll enjoy his blog.

rallying the troops…

It’s time to make the NDIS Real in 2012

Monday, April 30 will see the biggest rally of people with disabilities Australia has ever seen join forces to ensure the National Disability Insurance Scheme becomes a reality.

From the Every Australian Counts website here is just two reasons why an NDIS is so important…

CLICK THE LINK TO SIGN UP TO SHOW YOUR SUPPORT
AND TO RECEIVE UPDATES FROM THE CAMPAIGN

Rally events will be held in six capital cities around Australia and will be a fantastic way to re-emphasise the message to the Government and the general public.

Mac is having the day off school to attend the rally.  It is important for him to be involved, to understand and to be a part of something that could be ‘life changing’ for him.

Mac, Shawn and I will be accompanied at the rally by my mum, my sister and our 15 yo nephew (also taking a day off school to support his cousin) – a couple of other willing family members have had to stay back at home and help out with other commitments (the NSW rally is 3hrs away so it’s a big day).  We do appreciate the support we get from our family and friends, their willingness to learn from us, to take the time to truly try to understand the real issues and, more importantly, their preparedness to change their own mindsets means so much.

Mac will have wheels decorated and we will be taking some banners with us.  I have added banners for others to use/share on the Inky Ed! facebook page.

mad as hell!

I have taken the pledge… have you?

CLICK IMAGE TO OPEN ‘Mad as Hell’  INFORMATION PDF

This works for us because the “mad as hell” campaign is not prescriptive.

Good disability policy is not a ‘one size fits all’ solution.  Control and choice needs to be in the hands of the people with disabilities and/or their families.  So much money is wasted under the current charity based model of disability support.

I know I want quite different things for Mac than the Government/bureacrats/Carers Association/Spastic Centre/ADHaC/DET…” think I want.

Chances are I probably want different things to other families of kids with disabilities.

This is the way it should be – we are individuals.

For example at this stage of Mac’s life I don’t want (or need) respite, I don’t want physiotherapy, I don’t want support for nappies only to be told ‘you can’t buy the ones you want (or need)’ and I don’t want to sit on waiting lists for years for technology or equipment Mac actually needs.

I wouldn’t mind some financial assistance to attend the odd conference to help Mac out and for me to learn more (instead of respite).  I do want to choose which therapists we want to use, I wouldn’t mind being able to use some respite money for getting some help with Mac while I do his physical therapy (or have someone help me do his physical therapy).  I want to be able to make sound choices for (and with) Mac and allow him to not be seen as a ‘charity case’ but allow him to thrive and reach his potential – none of which is easy under the current ‘broken’ system.

The Mad as Hell campaign was covered in The Australian today: