Luke Deserves So Much More
June 21, 2009 10:26am
LUKE Modra spends 20 hours a day locked in a spartan room. He's alone. His guards pass his food through the door.
He has a TV in his room, but no remote control.
For Luke, simple luxuries such as toasters or a kettle are banned in the suburban Melbourne house that has become his prison.
Luke has never broken the law. He has never been charged or convicted of any wrongdoing.
But he has been given a life sentence - autism, a complex condition of developmental disorders that affect communication and social skills.
"Everybody deserves somebody to love, something to look forward to. Luke doesn't have that now," his mother, Ellen, said.
Luke, 20, is considered one of Victoria's most severe autistic cases. So bad are his symptoms that his heartbroken parents have been unable to care for him at home for the past five years. Because of his violent tendencies, he now lives in a Department of Human Services residential property. He shuns human contact and even his carers are frightened to be in the same room with him.
And his devoted parents are desperate for help. While Mark and Ellen acknowledge they are unable to care for Luke, they argue the care provided by the DHS is not right for their boy. "He has almost no interaction with other human beings," Mr Modra said. "It's like living in a private hell." Mr Modra said Luke spent all day tearing up his clothes because he was so bored. "But if you were in there, you would be doing the same thing," his father said.
Meredith Ward, from the Victorian advocacy body Autism Family Support Association, agrees.She said she had not heard of any other case in which an autistic person was cared for in the manner of Luke Modra. Ms Ward has seen Luke's accommodation, describing it as a jail. "For an adolescent, the DHS should be able to come up with some other support model," Ms Ward said. "He has no quality of life - and neither does his family."
Ellen and Mark are fighting for their son's dignity and are determined to restore some joy to his life. They say he deserves that. Mrs Modra remembers the joy she felt bringing her much-longed for baby boy home from Waverley Hospital in 1988. She considered she had achieved life's ultimate trifecta: the perfect baby, the loving husband and the sprawling family home.
Mrs Modra, now 50, left her job as a medical scientist at the Peter MacCallum Cancer Institute to be a stay-at-home mother. Husband Mark was earning a comfortable wage as an engineer and she said life was near perfect. 'HOW could I be so lucky?" she said this week.
It was a mother's instinct that first made Mrs Modra suspect something was wrong. She said the family celebrated the joy of Luke's first smile, his first words, his first steps and all the milestones of a child's life. But there was a nagging doubt in his mother's mind.
The maternal health nurse told her she had nothing to worry about; Luke was doing well for his age. Mrs Modra said she noticed that at family birthday parties Luke never seemed to mix with his many cousins. "If they were playing in one room, he may just sit alone in another," she said.
Mrs Modra raised her concerns with her siblings, who also had young children. She also talked to other mothers about Luke's shyness. "But they would say, without realising Luke had a disability, that he was talkative," she said. "They would give as an example that he could come into a room and tell you the name of nearly every piece of furniture."
Mrs Modra shared her concerns with doctors, but said they assured her all was well.
When Luke was 2 1/2, the Modras welcomed another baby, daughter Hannah. Two years later - on a Friday in 1993 - the Modras were called to the Royal Children's Hospital. A doctor gave them four pieces of paper and left the room. On the final page, buried in almost the last paragraph, was the word which shattered their lives. Luke was autistic.
"It was 5.30pm and the doctor waltzed back in and suggested we call some support services to discuss the condition," Mrs Modra said. "He then showed us the door." Ellen and Mark went home in tears. Later, Luke went to Essex Heights Primary School in Mt Waverley, which under principal June McDonald was renowned for its inclusive program for children with disabilities.
But in 2000, Luke was moved to Bulleen Heights Special School and his parents say his violent episodes worsened. Ellen, who was looking after Luke and four other children at home on her own, would drop off her oldest son at the school gate where she said he would be met by up to six men who would "look at home on the Collingwood back line".
She said they would frog march him into his "classroom", an isolated area fenced off from the other students. "The school suggested Luke go on medication, mild sedatives to keep him a little bit calmer, a little bit easier to control," Mrs Modra said. Reluctantly, the Modras agreed, but the school continually asked for dosage increases so that Luke could be kept under control. Luke's violence became worse.
The shattered parents said the medication turned their son, who had been able to read, write and communicate, into a "zombie". "His eyes would roll back in his head, his tongue became wooden and he would go into spasms," Mr Modra said. After seeking further advice, Luke was taken off medication. He remains non-medicated.
After five years at the special school, Luke was told he was no longer welcome. His teachers said the 15-year-old was too dangerous to be in the company of children as young as eight. At the same time, respite carers said he was too hard to handle.
Finally, breaking under the stress of caring for Luke at home without respite care, Mrs Modra marched into a DHS office and demanded a short respite. Luke has not been home since, remaining in the care of the DHS.
And on the eve of his 21st birthday, his parents revealed that he spends up to 20 hours a day in solitary confinement in a "community based" DHS property. They say his carers will not be in the same room as him and that they deliver his food through the door.
"When Luke goes out, he has to walk through a specially designed cage so he and his carers never share the same space," his father said. Even DHS insiders, who asked not to be named, said Luke's carers were unable to handle him. "They are really good at keeping him in isolation," a source said.
His carers say they can't be in the same room as the strong young man because he can be violent. Luke's family admits he is no angel, but says he deserves better. "There has to be a better, more humane way to deal with people with severe autism rather than just locking them up and throwing away the key," Mrs Modra said. DHS spokesman Brendan Ryan said if Luke's parents had concerns, they were "happy to discuss them".
BUT Mr Ryan said the DHS was satisfied with Luke's level of care. "He is receiving a wide and intensive level of care," he said. Mr Ryan said there were staff at Luke's house 24 hours a day.Speech pathologists were also provided, he said.
Mr and Mrs Modra say they have been offered $350,000 a year to pay for carers if they take Luke home. That is estimated to be tens of thousands of dollars less than the cost of keeping Luke in DHS care.
His parents have bought a flat for Luke next to their house and Mrs Modra has returned to work to help pay the mortgage. But the couple say they cannot yet have Luke at home because they are still trying to cope with the tragic death of their 17-year-old daughter, Hannah, in January.
In a diary found days after her death, one of Hannah's last wishes was that Luke have proper care. "Her dream was to one day get married to a fantastic husband who would ride bikes and go on hikes with Luke, that was in her diary," Ellen said. "She died two days after she wrote that."
Ellen said Hannah had a close relationship with her brother. "Hannah was the sort of girl who would always come to see Luke," she said. "She saw the worst of it. She really hated it."
The Modras are regular churchgoers and said that faith had given them hope. "What we have always wanted is for Luke to be a valued member of society," Mrs Modra said.
"I just want kids like Luke to be supported and respected and to live happy and productive lives."