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:

3 Comments

Filed under Inclusion... straight up!

3 responses to “mad as hell!

  1. Megan

    In Ontario Canada where I live they finally changed the limits on respite funding. It can now be used for child care for any of your children, for a cleaning service, for recreational programs, and to pay 1:1 support staff to attend rec. programs with your child. I “think” you can also use it for equipment. I work as a respite provider and it seems like it is so much better for families. I see families like yours who don’t want time away from their child but LOVE having someone come and do their floors while they play with their child. I’ve also been paid as a baby-sitter with a few extra skills so parents can go out to a movie on a Friday night.
    (still definitely problems of course, parents being put on a waitlist for funding they are legally entitled to etc.)

  2. Gina

    Megan, thanks for the insights. Canada does it sooo much better than we do *sigh*. Flexible respite has been trialled and run under ‘pilot programs’ here in some areas of Aust. Seems crazy they need to ‘trial it’ considering it really is obvious. Gina

  3. A lot of countries are better than Australia in that regard.

    St James Ethics Centre asked as much, especially from the perspectives of the carers and those with disability.

    St James on the Ethics of Caring in a Good Society

    What I like about the Mad as Hell pledge is that you get information based on your electorate.

    Apart from the principles of it.

    And did somebody else notice the reference to Dignity for Disability, which could potentially make the representative undignified in the eyes of a few or many?

    Andrew Sutton wrote a great article saying that Australians are engaged in grown-up politics.

    (Look for Conductive World to find it).

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