“Carol is such a wonderful person – she loves Lego and Harry Potter and colouring in, and she doesn’t like to be angry. But the interventions we’re trying aren’t working and no-one wants to know,” says Ms Cooper.
Carol has been involved in multiple incidents including assaulting support workers and police, brandishing a knife in a suburban street and triggering a police Special Operations call out and smashing multiple car windows.
She has damaged her disability accommodation and a private rental, thrown bricks and wielded knives and metal bars at police. She regularly harms herself.
Ms Cooper and Mark are deeply concerned that Carol can be danger to herself and others, and they fear that she might be shot if she confronts police who are unaware of her history.
Mark says he is beside himself: “With the amount of police interactions she has, it only takes one inexperienced person and they’ll shoot her on the spot. They’ve been very good but I’m always worried about it.”
Despite knocking on every door for assistance, Carol’s family have been unable to find suitable accommodation for her. She is now facing homelessness because she was evicted for damaging the respite home where she lived.
Mark and Ms Cooper want assistance to find suitable housing for Carol, and they also want her to have a mental health assessment. They also cannot find a psychiatrist who will agree to give Carol this assessment, despite having asked many for help.
“I have been turned down by 20 psychiatrists in her area,” Ms Cooper says. “I’ve called the Disability Services Commission, I’ve tried local and federal ministers, I’ve called all my contacts, I don’t know what else to do.”
When Carol is taken to the emergency department during a crisis, clinicians tell Ms Cooper and Mark her behaviour relates to symptoms of Smith Magenis Syndrome, and she does not have a mental health condition.
But Ms Cooper believes Carol’s regular self-harm is a sign her mental health needs to be assessed, particularly to determine the efficacy of the long-term medication she has been taking.
Police or ambulance officers have been called to incidents more than 140 times, and ambulances will no longer attend Carol without a police presence. When Carol is taken to hospital (usually in Footscray or Sunshine) she is often chemically restrained and has been shackled to the bed.
Last week she strangled one of her support workers and assaulted another with a piece of glass so badly they required stitches. Police have charged Carol with criminal damage and assault, and she is due to face court in April.
It’s not an issue of funding. Carol has been allocated money by the National Disability Service for purpose-build suitable disability accommodation, known as a “robust build”, but the wait for that is at least 12 months, says Elle Cooper.
Ms Cooper says Carol is falling between the cracks in the disability and mental health system. Police have been “amazing” in their approach to Carol, but had also expressed concerns about her safety, she says.
Mark has also appealed to his local member – including doing a sit-down protest in his office – but with no result. He has the option of relinquishing Carol to the care of the state, but he is very reluctant to do this.
He has now taken leave from his shiftwork so that Carol can stay with him after being evicted.
“She is the most gorgeous, caring, loving person you’d ever meet, she’s an absolutely delight, but then she has these episodes. I just find it so hard to deal with,” he said.
The Minister for Disability, Luke Donnellan, said the state had “picked up the slack” from the National Disability Insurance Agency to support more than 1000 Victorians with complex needs transition to the national disability scheme.
“Simply handing over funding and a phone number is not enough – the NDIA needs to step up and guide people through the available services as was promised, instead of leaving them to battle bureaucratic processes on their own and ending up in hospital,” Mr Donnellan said in a statement. “As soon as we heard about this case, the department got in touch with both the family liaison and contacted the NDIA to ask for further assistance and will continue to do so.”
A spokesperson for the National Disability Insurance Agency said it would continue to work with Carol’s support coordinator and her family “to make sure Carol has access to disability-related supports she needs, including suitable short and long-term accommodation”.
*Not her real name
**No surname used to protect Carol’s identity.
Miki Perkins is a senior journalist and Social Affairs Editor at The Age.