Waiting on the Disability Support Register
“It’s hell, this bureaucratic power over people!”
by Aisha Dow, The Age, April 6, 2014
At the end of a small cul-de-sac in Ashburton lives a miserable woman who, for six days a week, does not eat, shower or leave the house. Ghislaine Carlauce is legally blind and has cerebral palsy, a movement disorder that has left her body stiff and hunched.
The 59-year-old needs a carer to dress, feed, wash and travel to appointments and outings. But Ms Carlauce is given only enough government funding to pay for six hours with her ''angel'' helper Marie, who comes on a Thursday. For the rest of the week she sits in the house with her little dog in her same grey nightie, not eating.
''When Marie comes there is nothing to say - you've seen no one,'' Ms Carlauce said. ''I live in hell, what's the point? Everything is black, black, black, all the time.''
Ms Carlauce is one of more than 4200 Victorians waiting on the disability support register, in her case waiting for funding for a carer who would look after her 28 hours a week, allowing her to sustain friendships and live her life with dignity.
According to a leaked government document obtained by Fairfax Media, the average wait on the register is about 2½ years. Ms Carlauce has been waiting more than five years. During that time, she has lost about 30 kilograms and a $90,000 inheritance, which was spent on hiring a carer five days a week, until the money ran out.
In 2011, a Victorian Auditor-General's report found the Department of Human Services had no consistent, co-ordinated system of identifying people at risk.
Disability Justice Advocacy executive officer Trevor Carroll said from his perspective this had not improved: ''For example, we've got a client who has been on the wait list since 2007.''
Mr Carroll said ageing parents were being forced to relinquish their adult children into state care because they were not getting enough respite or support.
In one case, he said, an 80-year-old woman left her 50-year-old son at a hospital because he was trashing the house.
Public Advocate Colleen Pearce said Victorians were getting ''stuck'' on the disability support register, which has grown by 30 per cent since 2011.
''Our understanding is that it is not a waiting list as such in that people progressively move up the list in numbered order but, in fact, it responds to availability of funding packages and urgency of need,'' she said. ''Therefore, people could be on the register for three months or three years without knowing when their needs were going to be met.
''This is very disheartening for individuals and families because they have been told they are eligible, which gives rise to hope, but this dissipates over time.''
Minister for Disability Services and Reform Mary Wooldridge said the Coalition had allocated an extra $397 million to disability services since it took office, taking annual funding to $1.6 billion.
''Even with this record level of investment, there continues to be a high level of unmet need,'' she said. ''This is why the Victorian Coalition government has been a leader in the development and rollout of the national disability insurance scheme.''
Victorian Council of Social Service chief executive Emma King said people on the register could not wait until 2019 for the rollout of DisabilityCare Australia.
Opposition community services spokeswoman Jenny Mikakos said many people were going broke trying to make ends meet and they would be left ''high and dry'' if the federal Liberal Party walked away from its commitment to DisabilityCare Australia.
LISA Comment: It is not surprising so many are waiting on the DSR, as the overall waste by the DHS is outrageous. Much of the waste being through the shocking and wasteful management processes, procedures and reactive management which sweeps rather than addresses and fixes problems. And, the department’s bureaucratic power over the people it is intended to serve is extremely costly.
The most restrictive factor of the DSR is certainly the serious limitation on outstanding needs. It is shameful on people with disabilities and ageing parents doing it tough with no real relief in sight.
On the political side the restriction is on the movement of existing group home residents - no one moves anywhere without DSR sanction - and there is little of this.
Choice, control and quality in any service provision is limited where the service provider has a captive market. The DSR ensures the DHS and CSOs have a captive market - consumers cannot move group home or choose their service provider.
The department will not change the group home support service funding from block to ISP (Individual Support Package), to allow all group home residents to move to another group home or, as a group, choose their service provider.
Changing the support service fee from block to ISP funding would be little more than the stroke of a pen, as the cost would be similar or less. Maintaining block funding is maintaining bureaucratic power over people.
Extra 1: The Public Service – More of the same, no matter which political party is in power – The Canberra Times, April 9, 2014
Extra 2: Dedicated group homes needed for those with PWS – ABC Lateline
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