Two hours once a fortnight is the only respite 64-year-old Greek born *Helen gets from looking after her 46-year-old mentally disabled son *James. Since his birth, Helen, who requested that their real names not be used to protect their privacy, has been his full-time carer. And since her husband passed away 25 years ago, she’s been looking after him alone.

“People with disabilities are socially isolated; it’s like they are ostracised and there is a lot of social stigma attached to their conditions, especially within older communities including the Greeks.”
-Stelios Piakis

Those two hours are a blessing for both mother and son. For Helen, it gives her a chance to relax, look after herself and make sure she has the strength to carry on in her life’s role. For her son, it means a whole lot more. The staunch Collingwood supporter is allowed to socialise with people his own age and be an independent man in his 40s – albeit for a short time. In Helen’s 46 years as a full-time carer, these two hours are the best thing the government has ever done for her and her son, she said. But the federal government is planning on giving a whole lot more to people, and carers of people, with a disability.

A complete overhaul of disability services is on the cards for Australia thanks to a shake up recommended by the Productivity Commission’s report into disability services. And the main recommendation is to develop a National Disability Insurance Scheme (NDIS). The scheme, that will likely cost Australia around $6.3 billion dollars, will provide support and much-needed help to people with disabilities and their carers.

Community Services Minister Jenny Macklin told parliament that this means “working with the states and territories to develop common assessment tools, so people’s eligibility for support can be assessed fairly and consistently, based on their level of need”.

“It means building workforce capacity so we have more trained staff to support people with disabilities. And it will include developing rigorous timelines, milestones and benchmarks to support the delivery of these and other essential foundation reforms, and hold governments accountable for progress.”

Stelios Piakis, aged care and disability services manager, Australian Greek Welfare Society told Neos Kosmos that this overhaul is long overdue and much needed. Because the current disability system has different levels of support and different funding and care throughout Australia, there is “no uniformity and there are many families who fall through the cracks of the system,” he said.

The recommendations by the Productivity Commission aim to bring about a level of uniformity to the current model. And, as the NDIS is a national scheme, it will make it easier for people with disabilities and their carers to move around Australia and access the services they already receive. But Piakis understands that in order to do this, every day Australians will be faced with another tax and this additional financial pressure may push the NDIS on the backburner. “The thing is, if there’s going to be an additional tax, will tax payers be able to afford it? Given the current economic situation, it may be a difficult decision the government has to make,” he said. “However, Australia is a first world country and it’s supposed to deliver and offer the best services for its citizens. And of course citizens with disabilities are also citizens and have to be taken care of. We have to remember that disabilities don’t only come from birth; there are people who have workplace accidents who have disabilities so it’s a matter being able to deliver a budget which aims to not only ensure that this country is financial stable, but to make sure its citizens are looked after.”

As a carer, Helen told Neos Kosmos “everyday is a struggle”. She has never been able to work as she has had to take care of her son. So not only is it emotionally and physically difficult, financially the “struggle” is hard. Widowed for 25 years, she has on numerous occasions had to borrow money from her children just to make ends meet. Having the additional funding from the scheme would go a long way for a family that really doesn’t have a lot. Helen’s biggest nightmare is if she dies and no one is left to look after her son. The fear that escalates inside her thinking of this is impossible to imagine.

“They have to do it,” Helen said of one of her other children who will have to take on the role of full-time carer. If there was a working NDIS, Helen could almost rest assured that there would be appropriate insurance in place to see her son is looked after. Helen taught James how to walk to the corner milk bar to get exercise due to his high blood pressure.

Apart from that, he doesn’t leave his mother’s side. Everywhere she goes, he goes; she cannot leave him alone. “People with disabilities are socially isolated,” said Piakis, “it’s like they are ostracised and there is a lot of social stigma attached to their conditions, especially within older communities including the Greeks.”

Socially, Helen and James are isolated and alone and she says that’s why he is the happiest when he gets to socialise with friends through the two hours provided by AGWS.

“Every Saturday morning when he knows he is going out with AGWS, [James] wakes up really early and waits by the door,” said Helen emphasising how much these day trips mean to her son and how social activity boosts his morale, confidence and well being.

The social stigma attached with disability was one of the issues explored as part of the Productivity Commission’s report into disability. Additional funding needed to combat this was the reason behind the development of the NDIS. The Victorian Government is fully supportive of the NDIS.

Victorian Premier Ted Baillieu announced that the government is “pleased that the Productivity Commission has taken note of (the government’s) over arching support for an NDIS as well as other specific suggestions such as the need to include people with significant and enduring psychiatric disabilities in the scheme and the need to urgently develop a common assessment tool”.