General News Sector News — 16 April 2014
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.bigstock-Child-Portrait-5332592

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.

This article first appeared on ‘Sydney Morning Herald’ on 14 April 2014.

 

 

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