ASHLEY HALL: The federal and state governments are being urged to give people with intellectual disabilities more say in the design of the National Disability Insurance Scheme. Advocates
ASHLEY HALL: The federal and state governments are being urged to give people with intellectual disabilities more say in the design of the National Disability Insurance Scheme.
Advocates for the disabled say their call is supported by recent recommendations from the Australian Law Reform Commission.
Samantha Donovan reports.
SAMANTHA DONOVAN: Professor Chris Bigby is the director of the Living with Disability Research Centre at La Trobe University in Melbourne.
She says people with intellectual disabilities need to be given more say in the running of their lives.
CHRIS BIGBY: At the moment we have a very black and white type of regime really to involve people. It’s sort of all or nothing.
So if people are seen not to have capacity to make the big decisions in their lives then the only alternative is to take away all of their rights and to appoint a substitute decision maker or to go underneath the radar and have an informal supporter who isn’t recognised by formal systems.
SAMANTHA DONOVAN: Professor Bigby doesn’t think people with intellectual disabilities have been given enough input into the design of the National Disability Insurance Scheme.
CHRIS BIGBY: There’s a great emphasis in the NDIS on the lived experience of disability, but predominantly that’s the lived experience of physical or sensory disability or being a parent of somebody with a disability or a family member.
There are no people with intellectual disabilities on the advisory board or on the board itself and they’re 60 to 70 per cent of the people that are going to be using the NDIS.
SAMANTHA DONOVAN: Professor Bigby says skilled support is needed to enable people with intellectual disabilities to have their say in the decisions that affect them.
And recent recommendations of the Australian Law Reform Commission support that change in approach.
CHRIS BIGBY: So there was a very key recommendation, which is really moving away from this idea of substitute decision making and the best interests of people – which is somebody making the decision, taking into account their preferences, but overall what’s in their best interests – to a recognition of people’s right to have support to make decisions and for those decisions to be respected, whether people think they’re good or bad decisions.
And if they are receiving support, it shouldn’t be their best interests; it should be their will and preference and a rights perspective, rather than some sort of more paternalistic best interest.
SAMANTHA DONOVAN: Chris Bigby says the Law Reform Commission is also recommending that appropriate safeguards be put in place to ensure the trust of people with intellectual disabilities isn’t abused.
CHRIS BIGBY: So what they’re suggesting is that people should be able to be appointed as decision making supporters in a more formal way and they would be expected to behave taking into account people’s will, preferences and rights and that they would get training and there would be some more sort of monitoring of those people, rather than being left in the informal sphere to do completely as they wish, which is what happens really at the moment if you’re not subjected to a guardianship order.
So it’s quite a groundbreaking proposal but would require legislative change at each of the state’s levels as well.
ASHLEY HALL: Professor Chris Bigby from La Trobe University ending Samantha Donovan’s report.