Like many Australians, Anita Cain adjusted her clocks on April 1, 2006, to reflect the end of another Sydney summer. In Anita's case, though, this was a task that had to be completed with military precision: her 11-year-old son, Niall, was born with a range of disabilities that included obsessive-compulsive behaviour - and timekeeping was one of his obsessions. After touring the house, the single mother of one was convinced she'd put back every timepiece, but had forgotten to adjust the spare watch Niall kept on his bedside table. When he noticed the next day, he lost control.

Infuriated, he clambered onto the stove top, sending glasses and mugs in all directions and, crying and screaming, began tearing at the kitchen clock. "He pulled the clock off the wall because it said a different time to his watch," recalls Anita, who could only look on helplessly. "There was glass everywhere."

As she stood in the wreckage of her kitchen, her son's inconsolable wails filling the room, something in her snapped, and she came to a realisation that filled her with shame and guilt: she could no longer share a home with her son.

"We both had a better chance of surviving by not living together," she admits, wearily. "We had a better chance as individuals and as mother and son because, by that stage, I really didn't like him. He didn't like me much, either."

The next morning, Anita left her confused and vulnerable son at a respite centre, abandoning him to the care of the NSW Department of Community Services (DoCS). A month later, she would formally relinquish her parental rights.

Anita found herself in a position that no parent should ever be in, yet hers is far from an isolated case. In the past two years, 32 children with disabilities have been given up to DoCS because parents can no longer cope.

The issue made headlines last November, when reports surfaced that Kingsdene Special School in NSW - the only weekday boarding school for sev-erely disabled children in Australia - may close due to the charity Anglicare having to withdraw financial support. Parents expressed their fear that if the school shuts, they may have to make the same heart-rending decision as Anita to abandon their child to DoCS.

Linda Burney, NSW Minister for Community Services, comments, "In terms of the closure of Kingsdene, Community Services is unable to predict the number of parents who will approach them to relinquish parental responsibility of their children. Nor can they know how many children will be at risk of harm if they stay with their families."

Most experts agree the welfare system is underfunded and tortuously complex. There are an estimated 165,300 children with severe or profound disabilities in Australia, yet their families typically receive just $105 in benefits a week, plus a lump sum of $1000 a year. Respite care is notoriously difficult to access, with many families languishing on waiting lists for three or four years, and eventually only receiving two days respite a month when care does become available.

Full-time care in small shared homes is even harder to secure. But paying for private care isn't an option for most parents, with costs of $50,000–$100,000, depending on the level of support required. Care for profoundly disabled children can cost more than $350,000 a year. With such little reprieve, exhausted parents struggle to deliver the necessary 24-hour care required for their disabled child, while also juggling paid employment and the needs of other siblings. A staggering 80 per cent of couples divorce - almost double the national average.

The last resort for parents who can no longer cope is to secure a short-term place in a home or hospital for their child and leave them there, forcing DoCS to find suitable accommodation for them. This is known as "DoCS dumping", and it is devastating for parents.

"It's like a Sophie's Choice," says Mary Lou Carter, founder of the disability lobby group Carers Alliance. "You have to choose between survival and relinquishing the child that you love. I think people would be surprised to find that Australia is a backwater in this regard; if you have a child with disabilities in this country, you need to have a lot of money. For our society to be so bereft of support for families is just immoral."

Minister Burney expresses her sympathy for parents of children with severe disabilities: "Sadly, I know that finding a placement for a child is not easy because family foster care is often not a suitable option, and it can be difficult to obtain a vacancy in a suitable residential facility."

Anita certainly tried her best to care for her son, but at a significant personal cost. She admits her marriage suffered as a consequence of Niall's all-consuming demands, and her husband left when their son was three years old. Since then, Anita navigated the sleepless nights and exhausted days on her own. "Living in that hyper-vigilant state for so many years catches up," she says. Her entire life was dictated by Niall's need for control and order. Every day had to follow a regimented plan, and if there were any deviation - "if it was threatening to rain and I wanted to bring the washing in", for example - Niall would throw a tantrum.

But despite the difficulty of caring for him, Anita never wanted to give him up. She remains haunted by the choice she was forced to make. "It didn't have to be like this," she states. "Had we been offered help earlier, before I was exhausted from no sleep and was too tired to deal with it anymore, things might have been different. I'd have loved it to be different."

Fortunately, after a few months, Anita regained her parental rights and launched a campaign to secure residential care, bombarding local media and making frantic pleas to every minister in the state. She succeeded in securing a place in a shared home. Today, she sees Niall twice a week (at the shared care home, so as not to disrupt his routine).

Anita's story is painfully familiar to Sydney couple Sharon Guest and Stuart Neal. Having spent several years trying to access residential care for their severely disabled, then five-year-old daughter, Jessie, they too eventually resorted to handing her to DoCS in 2007.

Jessie suffers from Sanfilippo syndrome, a rare, degenerative condition that causes extreme sleeplessness (often, she would sleep for just one hour) and hyperactive behaviour. It is unlikely that she will live past her 12th birthday.

Yet, despite the toll that caring for Jessie took on both them, Sharon can't stop herself from bursting into tears at the memory of abandoning her daughter at the Sydney Children's Hospital, where she had been admitted for a sleep study.

"It was the most awful experience of my life - to leave a child in hospital," she recalls, struggling to compose herself. "I remember going through her little clothes, packing them up and knowing that she couldn't stay with us. I wanted to hurt myself; I wanted to feel pain.

"We crept out because we didn't want her to see us leaving. It was the most anguishing experience I've ever known. You feel that you're putting this innocent little child through this horror because you can't cope. But we couldn't rescue her - we couldn't take her home. It was too hard to go back and we knew we wouldn't get any help. We knew we couldn't do it."

The couple received some restitution when their case was raised in the 2007 Wood inquiry into NSW Child Protection Services, and Jessie's living arrangements were resolved. She now lives with a foster carer and sees her parents and younger sister, Bibi, twice a month. "I never thought I'd be in crisis," says Sharon. "I'm a proud person and Stuart and I are strong together. But we weren't managing at all and we were deranged by lack of sleep."

Her and Stuart's experience has convinced her that current policies, which favour keeping disabled children in the family home under the sole supervision of weary parents, are totally misguided. Sharon believes these policies even put children at risk of violence from exhausted parents. "People wouldn't want to intentionally hurt their child, but I'm sure that people lash out. You get to a point where you can't take it anymore."

But it doesn't have to be this way, as those parents lucky enough to secure residential care have discovered. That's why the threatened closure of Kingsdene has aroused such strong reactions.

The school is situated in a leafy suburb in Sydney's north-west. At morning tea on a warm summer's day, a hush has descended over a classroom, as students busy themselves demolishing pink cupcakes. Photos and artworks line the walls. A closer inspection reveals they are laminated - a concession to the sometimes uncontrollable temperament of the students. Broken windows are so commonplace the principal, Anna Green, says that should Kingsdene shut down, the local glazier could go out of business.

Twenty-one students, aged between 10 and 18, attend the school, which offers classes during the day and a residential program overnight. On Friday afternoons, students return home to spend the weekend with their families.

Accredited by the NSW Board of Studies, the curriculum includes conventional subjects like English and maths, as well as living skills like cooking and table manners. "The Monday to Friday respite gives parents time to develop the rest of their lives and to work with their children who don't have disabilities," explains Green. "So when the child comes home on the weekend or school holidays, the family has the strength to deal with the issues and give that child the time and love they need."

But Kingsdene's days are numbered. Late last year, Anglicare, which contributes $1.2 million annually - about a third of the school's running costs - announced that it could no longer afford to keep contributing to the school. If the state or federal government doesn't step in to cover the funding shortfall, the gates of Kingsdene are expected to close for good - after 33 years - at the end of 2010.

This would have major ramifications for parents, who see Kingsdene not just as a school, but a lifeline.

For Vanessa Browne, whose 15-year-old son, Alex, has Sotos syndrome (a disorder that causes him to tower over children his age and suffer development and behavioural problems), the school's closure would leave her with no choice but to relinquish her parental rights.

Before securing Alex a coveted place at Kingsdene, Vanessa says her life was consumed by caring for him. A former nurse, Vanessa says her marriage buckled under the weight of Alex's demands.

She explains that looking after him meant being constantly alert to the possibility that he would slip away and smash windows, pull everything out of cupboards, or even smear faeces all over the walls. Yet these episodes - and even the chronic back pain she suffers from moving Alex around - pale in comparison to the fact that Vanessa has had to call 000 several times after being hit by Alex, who stands at a daunting 195cm. Although doubtful Alex would ever seriously hurt her, Vanessa says that, as a slight, single mother, she has little choice but to call on the police when she feels threatened.

However, Vanessa's biggest concern isn't for herself, but for her 12-year-old son, William. "A lot of siblings of severely disabled children struggle with depression and self-esteem issues, and they're neglected because the parents are so busy controlling the disabled child," she says.

Although Vanessa's overwhelming love for Alex is obvious, she is also fiercely protective of her younger son. "I cannot have William living under fear," she adds. "It's just not sustainable."

Vanessa has already warned the Department of Ageing, Disability and Home Care that Alex will have to move into supported accommodation if Kingsdene shuts down. Although she has been told she will be given priority when a residential-care vacancy arises, like so many in the school community, she is praying it won't come to that. Like many parents, Vanessa says Kingsdene has helped her son learn valuable social skills.

Last November, a delegation of Kingsdene parents travelled to Canberra to plead their case. There, they met with Bill Shorten, Parliamentary Secretary for Disabilities and Children's Services, who says ongoing discussions are being held between Anglicare and federal and state governments about future funding.

"I maintain my view that the Kingsdene model offers benefits for students, and will continue working to keep the school open," he tells marie claire.

Sign the petition to save Kingsdene from closure

While a lack of funding is the main issue for Kingsdene, it isn't the only problem it faces. Ever since the 1983 Richmond Report, which recommended moving people with disabilities out of facilities to be cared for in the community, there has been ideological resistance to residential institutions for disabled children.

"You get told that children are best in the home, supported by services. That's the biggest joke I've ever heard," says Mary Lou Carter. "You say that to parents and they laugh." But there are signs that more help for parents might be on the horizon. There is a proposal before the Productivity Commission for a national insurance scheme. This would see all taxpayers pay a compulsory levy which would cover the expenses of people who are born with or acquire a disability. The Com-mission is due to report back in 2011.

In the meantime, Green says, "We need many more Kingsdenes. In five years' time, I'm sure people will have moved around to the understanding that a boarding school model for students with disabilities is very worthwhile."

Meanwhile, Green, who has to turn families away from Kingsdene every year, is concerned by the number of families trying to cope "without any care at all".

She warns that it's all too easy for mainstream society to ignore the needs of the disabled, but says, "It can happen to any of us. We can all acquire a disability at any time. It's the great leveller."

It's a sentiment echoed by Anita, who says people don't appreciate the pitiful lack of resources available for profoundly disabled children until they find themselves in that situation.

After successfully fighting DoCS for her parental rights, former nanny Anita studied to become a lawyer. Today, she is determined to help other families avoid the hellish experience she went through. "I wanted to speak out for the people who didn't have the support that I have," she says. "For every child who has someone to fight for them, there has to be at least a hundred whose parents are just too tired, and too intimidated by these departments, to keep fighting them."