I have taken the pledge… have you?
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: