This article appeared in the Brisbane Times, December 13, 2014
Written by: Julia May
People with intellectual disabilities are being excluded from the development of the National Disability Insurance Scheme despite making up more than two-thirds of future users of the service, advocates warn.
Researchers, carers and people with intellectual disabilities fear that without closer engagement, the $22.4-billion scheme will be disproportionately tailored to the needs of the physically disabled, leaving those with cognitive impairments as the sector’s “poor cousins”. They say the NDIS pilot schemes are showing signs of inadequate design.
Bruce Bonyhady, the chairman of the National Disability Insurance Agency that oversees the scheme, acknowledged at a conference last month that people with cognitive impairments had not been properly consulted on the design process and that this needed to be rectified. But advocates say time is running out ahead of the 2016 national roll-out. Mr Bonyhady was not available for comment.
Professor Christine Bigby, leader of the Living with Disability Research Group at La Trobe University, said that although people with an intellectual disability would comprise up to 70 per cent of NDIS users, there had been no formal engagement with the sector and no cognitively impaired representatives appointed to the boards of the disability insurance agency or its advisory council.
Kevin Stone, executive director of Inclusion Australia, said it was “late, but not too late” for improvements.
He said the group had recently been invited to quarterly meetings with the advisory council and to help design the NDIS service charter and outcomes framework.
But he feared this was not enough, and told the council: “The abuse at [disability support centre] Yooralla is on everyone’s lips… But the most pernicious form of abuse is systemic abuse, which occurs in organisations that don’t value and respect the voices of the people who are using them, and treat them like helpless beings.
“My greatest fear has been that the NDIA was turning into just such a creature, with an aloof management structure without processes to hear them. That’s still a very real possibility.”
Michael Sullivan has an intellectual disability and is vice-chair of the New South Wales Council for Intellectual Disability. He said that despite making detailed submissions to the 2011 Productivity Commission on disability and the Parliamentary Joint Standing Committee on the NDIS, his members had been ignored by the NDIA
He said quarterly meetings were not enough and their views could only be included via formal roles on the NDIA board and advisory council.
He said cognitively impaired people were chronically underestimated, and he criticised the emphasis on involving family members rather than disabled people themselves.
“People have an attitude that if you’ve got that label of an intellectual disability it means you can’t do anything, which is clearly not true. But people have a very narrow view, which is absolutely [what’s happening] within the NDIA… I think there’s a real lack of exposure to what’s possible.”
An NDIA spokeswoman said people with intellectual disabilities, their families, carers and peak groups were “extensively involved at every level of engagement” in the design of the NDIS.
She conceded that though neither the NDIA board nor the advisory council had intellectually disabled representatives, they did include family members. “It is their lived experience and direct input which helps to guide the agency in its design and development of the NDIS.”
Mr Sullivan said early indications were that NDIS pilot sites were not meeting the needs of cognitively impaired people, that the information provided was too complex, and that without more inclusive design the scheme’s much trumpeted focus on “choice and control” would become redundant..