'His potential quality of life is being destroyed'

Standing outside the courtroom, Annette O'Carolan still looked dazed by the ruling as she shook her head repeatedly from side…

Standing outside the courtroom, Annette O'Carolan still looked dazed by the ruling as she shook her head repeatedly from side to side.

"I still can't believe it. He has never received a single day of autism-specific education. We're not looking for the best service or a state-of-the-art one. We just want a basic autism service that will meet his needs," she said, holding a creased picture of her 14-year-old son, Lewis.

"Where he's going now, it's a psychiatric model. The fear is he'll end up in a psychiatric hospital, sitting in a plastic chair, medicated all day. The only reason he's not there now is that legally he's too young to go there."

For the O'Carolan family, yesterday was the culmination of a two-year battle in which they have been trying to secure appropriate education for Lewis.

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He has never received the kind of specialised one-to-one education that could have helped unlock the most restricting aspects of his condition.

The High Court action, they said, was their final hope of getting a State-funded service which would meet their son's needs and help release him from the grip of autism.

During this time, Lewis, who is severely autistic with significant behavioural problems, has been living with his parents at their three-bedroom terraced home in Phibsboro, without any education or intervention.

"You don't really live, you just follow him about and try to supervise him," said Colm, his father. "You can't watch TV, the knives and forks are gone, you have to eat your dinner out of a cup and gulp it down. All the kitchen chairs are broken."

Most of the doors have been ripped from the hinges in the house and there are gaping holes in the walls. Most of the plates in the kitchen have long been smashed. The damage is caused by Lewis's frustration at being unable to communicate or interact with the world around him.

Over the last 18 months, a number of proposals have been put forward by the Health Service Executive (Northern Area) and the Department of Education. The offers included swimming lessons, music therapy and a home help; followed by education and therapy at a sports hall in Cabra; and the final offer at Woodlawn in Lusk, Co Dublin, a facility the State argued was appropriate, but which the family said did not offer appropriate education.

During this time a number of autism-specific centres in Britain, which specialise in dealing with challenging behaviour, offered places for Lewis. As the legal process continued, and in the face of the refusal of health authorities to fund these placements, the offers were withdrawn by the centres.

The State argued that the Woodlawn facility was appropriate and Lewis would receive eduction from a highly-qualified special needs teacher, along with a range of therapies.

Annette said her fears that it was a psychiatric model of care were confirmed when she visited the facility. "I was met by a psychiatrist and psychiatric nursing staff. It was just an empty bungalow with no children ... we would be forced to give Lewis anti-psychotic medication to control his behaviour instead of proper therapy. Lewis has a developmental disability. He's not psychiatrically ill."

The HSE (Northern Area), which has offered the placement, declined to comment on the O'Carolans' allegations yesterday.

Following yesterday's ruling, the High Court has found that Woodlawn is "objectively adequate" and recognises Lewis's legal and constitutional right to education.

The O'Carolans, meanwhile, face a potential legal bill of up to €100,000 for taking the case. This a consideration of Lewis's mother at the moment, however.

"It's just heart-breaking to look on as we watch his potential quality of life being sacrificed and destroyed by bureaucracy and ignorance. He only has three years left. The State is responsible for his education, yet they seem to be willing to take that away from him."

Carl O'Brien

Carl O'Brien

Carl O'Brien is Education Editor of The Irish Times. He was previously chief reporter and social affairs correspondent