Hayden McLean with carer Jeanette Coombes. Photo: Eddie Jim
On a bad day, when he's frightened or when there is no one to help him make the day meaningful, Hayden McLean puts on a pair of incontinence pants, binds them tight with sticky tape to make himself feel secure, fixes on a couple of balloons for extra insulation and heads to the local shopping centre. There he engages in what he believes is his job: ''Shopping without money''.
The shopping list is short and always the same: a notepad and pen, perhaps some wool for his French knitting machine, and as many coffee-flavoured lollies as he can fit into his green bag. Over the past three years, according to Hayden's mother, Dariane, thousands of dollars worth of lollies have left Hayden's teeth ''rotting in his head''.
If not chased by a security guard, Hayden will sit somewhere quietly, unwrapping each lolly, tracing its shape on to a piece of paper, which in turn becomes the head of a person. He likes looking at the people and will sometimes, with limited verbal skills, try to make a friend.
Caring for Hayden
Hayden pictured at home. Photo: Eddie Jim
Often, though, it will go very wrong and he'll return home traumatised at the startled and unkind reactions he has inspired.
Hayden is 35 years old, severely autistic, epileptic, mildly intellectually disabled, and highly sensitive to noise and unkindness. He suffered horribly through more than eight years of being locked up and chemically restrained by the Department of Human Services - until this was found to be illegal under section 3 (1) of the Disability Act 2006, because alternative, less-restrictive intervention measures had not been fully explored.
Regardless, Hayden - who is governed by primal flight responses - managed to escape from these facilities dozens of times, either by making a speedy charge at a momentarily opened door, or squeezing his body through a space in a fence that could have barely served a cat. ''It would have hurt like hell, but he has a very high pain threshold,'' says Ms McLean.
Over the past 17 years, the DHS has spent millions of dollars trying to find a solution to a complicated human problem that requires finesse, expertise and careful management. In a November letter to state government ministers, Ms McLean noted that Hayden had been the subject of ''in excess of 250 missing person reports'' logged in the police system.
''A lot of money has been wasted,'' says Ms McLean, who like many parents of children with disabilities, has ended up working in the sector as an advocate. ''So much has been thrown at the problem and yet it hasn't been targeted in a way that would lead to sustained better outcomes.
''They've been great at implementing the most restrictive measures, but they're not listening to how the least restrictive measures should be managed.''
Currently, the DHS pays $35,000 a month - or about $420,000 a year - to an organisation called Life Without Barriers to provide 24-hour care for Hayden McLean at his rented home in the northern suburbs. However, in October last year, the department told Hayden's parents this funding would drop to $190,000 a year. Their option is to place Hayden in a new unlocked facility at Whittlesea for people with challenging behaviours who need 24-hour support - budgeted at $190,000 per year, per resident - or they can take the cash directly and work things out for themselves. The facility was due to open last month, but this hasn't taken place, and the current funding remains in play.
''If they put him in a facility, he'll just leave as soon as he feels threatened … just as he's always done,'' says Ms McLean.
In a week in which the federal Health Minister has made vague but high-profile statements about cutting waste and ''modernising'' Medicare, the story of Hayden McLean reflects two of the vexing questions that lie at the heart of health and disability spending: who should have a say in where the money goes, and how much a particular situation requires.
In their November letter to the state government, Dariane and Malcolm McLean argued that the $35,000 a month be sustained for at least 18 months, but targeted towards intensively training Hayden's carers as to what he actually needs, with a view to dropping the number of hours of care to 10 a day.
''We're at a point where a great deal of damage caused by mismanagement needs to be undone, and Hayden gets a chance to achieve a more stable and independent life, particularly as we [his parents] are getting older,'' says Mr McLean.
The McLeans are acutely aware that there are thousands of people caring for their disabled children with inadequate financial support. The bitter fact is that palsied and degeneratively diseased children in wheelchairs - whose nappies need to be changed, every meal spoon-fed, every bath-time an engineering feat - are essentially manageable at home. They are in effect, logistically at least, a private problem.
They're not destroying their rooms (which Hayden began doing at the age of 10) or getting on a bicycle and riding barefoot and bare-headed along the Western Ring Road against the traffic (a couple of years ago) - or fleeing from police and having their legs broken after running into traffic and being hit by a car, which occurred last April.
As his mother noted in her November letter: ''He has had hundreds of interactions with the police and security guards with a variety of outcomes including being held down, handcuffed, and him headbutting hard surfaces causing injury to his head, and damage to his property.''
He's been before the Magistrates Court three times for theft and on one occasion for assault, after manhandling a shop assistant who had tried to retrieve some of the lollies he had taken. The court, however, on forensic advice, has ruled Hayden unfit to plea and therefore not someone who can be managed by the justice system, a last-ditch option his parents had hoped for.
On the face of it, Hayden McLean's history could serve as an argument that he needs to be in institutional care. However, he has made some strong gains in the past 10 months, and his challenging behaviours have been markedly reduced. In that time he has amassed an impressive group of allies who include community members who run a Facebook page that keeps track of his movements, worked to repair and renovate his rented home, and have planted a vegetable garden in his backyard. Senior local police, too, are advocating on his behalf.
In September last year (in a letter provided by Ms McLean to Fairfax Media), Senior Sergeant Wayne Spence wrote to the Department of Human Services, noting that Hayden's behaviour during 2012 and early 2013 - leading up to the appearance at the Magistrates Court in April on the assault charge - had prompted ''multiple daily calls to police from concerned public''.
However, since April, and because of the involvement of a highly experienced behavioural therapist, Jeanette Coombes - who has been largely working for nothing - ''there has been improvement in Hayden's demeanour and movements within the community are less disruptive''.
While Senior Sergeant Spence acknowledged that it wasn't Victoria Police's role to dictate ''how the Department of Human Services allocates funding … I understand that managing risk is a major contributing factor''.
Senior Sergeant Spence argued that Ms Coombes' training regimen and 24-hour care ought to be maintained in the medium term, until a set of behavioural goals was attained.
In other words, he backed the McLeans.
Jeanette Coombes has worked with severely autistic people for 20 years. It's her projection that Hayden's care could be reduced from 24 hours a day to 10 hours if a core group of dedicated staff was appointed and trained in how to relate to Hayden and help him structure his day-to-day life.
She knows of five other people with equally challenging behaviours living in the community. ''But they receive the funding they need because they are otherwise a danger to others, to themselves or to property. Hayden is not a danger to others.''
A spokeswoman for the Department of Human Services confirmed that Hayden McLean ''receives an annual support package of $190,000, provision of (24-hour, seven-day) support at the private property takes the actual value of support to more than $400,000 per year''.
She said that disability services had been provided for Hayden ''for more than two decades'' - and she confirmed that he has been offered accommodation in a new purpose-built individual unit at Whittlesea, ''which will ensure he continues to have independence''.
She said the units are expected to become available through March and April.
''This is a sustainable arrangement which will also provide the 24/7 attention that the client needs.''