Fear, hope and disability

As a teenager, Patrick Cerato's life was laid out before him like a glorious picnic. A top athlete and scholar, he was on top of his game; there was, he says wistfully, nothing he couldn't do. At 21 he collapsed. Scans revealed an inoperable brain tumour buried close to the tiny, mystical pineal gland.

Three decades and 30 operations later, he is still alive, albeit with much ambivalence. These days he lives in a supported residential home with up to 31 men and women, and works as a gardener two days a week.

The rest of the time is filled with medical appointments. A former manager of a US food chain, now he has to be reminded to eat. He can no longer concentrate to watch a footy match, let alone play in one. In a relentlessly upbeat culture, it takes guts to admit to personal despair. ''I'm tired, mate,'' he says. ''I'm over all the surgeries.''

The story of disability begins with fear. This can be delivered, as in Cerato's case, with a thunderbolt diagnosis, or exist as a niggling unease within the mind of a parent who knows something is not quite right with their child.

For several years, parents Nikki and Chris Blakeley harboured a sense of disquiet about their son and daughter. Was it normal for Jessica to feel so anxious at kindergarten that she needed her father to stay with her? Were Jacob's angry outbursts in which he'd sometimes smash things just a boy thing?

With hindsight, the fact that both children were preoccupied with lining up their toys could have been a warning sign that they had autism, but on the other hand, they were loving and demonstrative.

For Krystyna Croft, there was no such ambiguity. Thirty years ago the paediatrician handed her baby born by emergency caesarean and baldly told her ''he's got Down syndrome''.

Over the years she has fought to prevent him from being held hostage by a stereotype: still, at his 18th birthday party a guest who hadn't seen him for many years turned up with an extra large T-shirt only to find herself confronted by a slim, well-toned individual.

Three separate stories linked by one common thread. While everyone to some extent exists at random, living with a disability has added another element of uncertainty.

For people such as Cerato, the rich tapestry of his life has become scorched with a question mark. The tumour will kill him eventually, he says but he doesn't know when. For the Blakeleys and Croft, it is the spectre of a far-away future that haunts them: how will their children cope when they die?

Earlier this year, Labor leader Bill Shorten gave an impassioned speech in Westminster, London, in which he talked about the disabled being cut off from society behind high walls and forced to live as second-class citizens.

It was this image, he said, that had prompted him to ask the Productivity Commission in 2010 to look at the possibility of funding a disability scheme to rid Australia of what he calls ''the apartheid of disadvantage''.

Last year, amid much fanfare, the NDIS was born. For the last 12 months it has been rolled out at certain sites in Tasmania, South Australia, NSW and in the Barwon region of Victoria.

But this knight in shining armour galloping to the rescue of Australia's 460,000 disabled people has had many stumbles along the way. Stories abound in the media about how the launch was too rushed; how staff were not properly prepared; how it had underestimated the costs of service providers.

The government has repeatedly expressed concerns about the NDIS funding and the way the scheme has been set up, alarming many in the disability sector.

''If we don't get on top of the proper management of the NDIS, not only would it not be sustainable, but it could end up as big a farce as the pink batts program or the $900 test program,'' federal Treasurer Joe Hockey said last month.

What has been missing in the general hoo-ha has been the voices of those it seeks to protect. As the first year draws to a close, how exactly has it changed their lives?

For Patrick Cerato, it has given him a roof over his head. As his health has declined over the years, so have his relationships. After he and his partner broke up, he left Queensland and moved to Geelong to live with his sister.

But because the tumour has badly affected his memory, and he also suffers from depression, he needed more support. His room in the light-filled building where he lives now, with its labyrinth of corridors is ideal, though it pains him to say so.

In the huge open-plan sitting area, sipping tea provided by the care staff, he says: ''I see the NDIS as a lifeline,'' before adding bluntly. ''If it wasn't for this, I'd probably commit suicide because I'm tired of trying to fit in.''

A highly sociable, articulate man, for many years after his diagnosis he carried on as normal. But his symptoms are getting progressively worse and he now finds himself aligned to a new group of individuals - the vulnerable.

''You do ask, 'why me? What did I do wrong?' I don't know how to be disabled. I don't know how not to be perfect.''

Under the scheme, Cerato is given a planner, whose job it is to work out his needs and draw up a list of goals - a challenge for someone whose future has shifted with the turn of a kaleidoscope to reveal a very different picture.

''I have no idea what they are now,'' he shrugs. ''I suppose I'd love to be normal and self-sufficient, but realistically that's not going to happen. Maybe it's about making it through the week without a stress attack.''

As a newcomer to the NDIS, he is yet to discover what more the scheme can offer him. He is cautious about viewing it as a panacea; trying to meet the individual needs of such a diverse group he understands is a gargantuan task.

There is, he recognises, no ''one size fits all'' solution to a global issue. He hopes the scheme will respect his dignity; too often in the past, people with disabilities have had to emphasise their deficiencies in order to receive the bare minimum, an exercise that can leave honest people feeling dehumanised. ''It goes against everything in your soul.''

Across a mahogany table strewn with files and papers, Krystyna Croft, calm and considered, almost bristles when asked to describe her experience with the NDIS. The word ''frustrating'' explodes off her lips while her arm sweeps across a sheaf of papers. After receiving funding for accommodation for her son, 30, she has been trying in vain to find a suitable home for him. Red tape and lack of clarity over workplace regulations and housing laws have made it impossible so far. Accommodation deemed a ''workplace'' requires the impersonal signs of the company office such as ''exit'' and ''assembly point'' and sprinkler systems. When does a home become a workplace? When it requires a professional carer to sleep there overnight.

Her first attempt to move him into a two-bedroom cottage attached to a respite care facility failed several months after Robert moved in when negotiations between the NDIS and the service provider broke down. He developed obsessive compulsive disorder and was clearly distressed.

Back home she worried about the place's institutional feel; meanwhile her son's care workers would text her with concerns about his unkempt appearance. There have been enough media horror stories about abuse in care homes to gnaw at her gut.

While there was no suggestion that anything untoward was happening to her son, the words of a psychologist she once heard talking on the radio echoed in her mind: ''If you have an institutionalised setting, you get institutionalised behaviour, which can lead to abuse.''

Robert is now temporarily living with a care worker and her partner. While Croft is relieved to have found somewhere, albeit temporarily, it is not ideal; she feels he should be living with people his own age.

At 64, she is exhausted. Not long before her son moved out, she says she lost the plot. ''I got really angry with him. I defend myself - after so many years of caring, you get sick of it. I lashed out and he backed against the wall.''

She believes the same anger and frustration are felt by her son; recently when he dines out with his parents he has started hitting the table and pushing things off it. ''He is saying he doesn't want to be with us.''

What rubs salt in the wound is how hard she and her husband tried throughout his childhood to teach him to stand on his own two feet: from the age of eight he was taking taxis by himself from Geelong Grammar to the special school where he had lessons in the afternoons. Over the years he has learnt how to make toast and tea, and hang out the washing. Croft, a former partner in a law firm, has made it her life's work to prepare him for the day when he has a front door key to his own pad.

''The NDIS has given us the capacity for our child to be supported to live independently, but there's a lack of clarity when it comes to what we can have because of regulations imposed by the state.''

Finding a meaningful job for her son has also been fraught because it seems they too are in short supply for adults like him. Because he wouldn't be productive enough to warrant being paid the minimum wage, the only options at the moment, she says, are daycare programs - things such as music and movement classes or healthy eating sessions which she dismisses as nothing more than ''babysitting''.

''In Mexico they employ people to pick seaweed up off the beach. In our wealthy society we are paying our guys to sit and do nothing.''

Understandably, Croft is sceptical about the NDIS being hailed as a social equity model. ''It hasn't come in to rectify a very poor social welfare system; I believe it's come in to get more people back into the workforce to pay more tax. I think it's more aimed at helping articulate people in wheelchairs find work rather than profoundly intellectually disabled people like my son.''

While Shorten has also acknowledged the long-term financial benefits of the scheme, it is, of course, possible that the NDIS can be both. At the Blakeleys' home in Lara, an oasis of green on the flat brown savannah between Melbourne and Geelong, chaos reigns.

While Jacob and Jess cheerfully chatter like magpies in the kitchen as they empty bags of chips into bowls, toddler Matthew pads around a room strewn with the flotsam and jetsam of family life, clutching a Thomas the Tank Engine DVD.

Not yet three, and so far without any diagnosis, Matthew's future has the bright ring of promise. Although he is showing some signs of having autism, chances are he will struggle less with the same issues that marred the early years of brother and sister, because he is already getting help.

Through the NDIS he receives a $12,000 annual funding package that pays for early interventions in the form of speech therapy, psychology sessions and occupational therapy. Meanwhile, his sister and brother, who attend a special school, have smaller packages to help improve their social skills and general independence.

For Nikki and Chris Blakeley, the relief of knowing their children are being helped to flourish rather than left to flounder in an unforgiving judgmental society is overwhelming.

For years they have forked out privately for therapies for their children, at night knitting their brows together to work out how to pay. Up until recently both worked full-time; Nikki in accounting and Chris as an aircraft painter at Avalon until Qantas pulled out and he lost his job. Now he has retrained in home support.

''I know how uncertain the future can be,'' he says. ''There is no guarantee there's going to be a disability pension when our guys grow up. It was a constant worry about how we were going to finance their future.''

Sunday afternoon in the Blakeley house looks pretty much as it would in any family. Jess, confident and articulate, is on her iPad, while Jacob shadows his little brother, keeping him out of mischief. These days their additional needs are being knitted into the fabric of an ongoing life rather than remaining the burning focus.

What their parents have learnt, what Croft and Cerato have also discovered, is that disability can push you to the limits; that there is no easy get-out clause for seemingly intractable problems muddled by love. But the flip side of fear is hope.

Kathy Evans is a Melbourne journalist.

The story Fear, hope and disability first appeared on The Sydney Morning Herald.

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