The O'Haras' experience has struck a chord with many parents, writes Carl O'Brien, Social Affairs Correspondent.
All Mikala Gourney could hear when she picked up the phone was a shrieking voice and a jumble of words. "It was Mary. She was hysterical. She could barely speak. All I could hear her saying was, 'they're taking my children away'. One of the kids crying in the background. There was this ferocious banging noise, which turned out to be the gardaí knocking on the doors and windows. I've never had such a distressing phonecall in my life."
At that moment social workers and gardaí were outside the small bungalow of Pádraig and Mary O'Hara in Kells, Co Meath. They had a care order seeking to commit the couple's five children - four of whom have autism - into health board care. In a panic Mary began to phone her friends to try to get whatever help she could.
The couple had been giving media interviews a few days earlier about their battle for therapeutic services for their children. Later in the week, without the couple's prior knowledge, health authorities arrived at their house with a care order seeking to commit their children to health board care.
Friends, including Mikala - who is also the mother of two special needs children - arrived at the house. Following talks between the O'Hara solicitor and the health authority, they voluntarily decided to hand over their children to health authorities.
The couple grabbed the children's toys and clothes, and prepared some food for them. The five children, aged between four and 16, clambered into the car and prepared to say goodbye.
"Mary was saying to them that they were just going away for a little holiday and they'd be back soon," says Mikala. "As they got into the car, Blaine [ nine] gave Mary a Mother's Day card he had made. That's when it really hit. She had tried to hold herself together, but we all just hugged then. I can't begin to say how traumatic the whole thing was."
It is a week since the O'Haras handed their children into care. Yet many say the fear provoked by the State's response on that Friday night is still resonating among parents of autistic children. The speed at which health authorities acted, followed by official silence surrounding the case, has only added to the sense of foreboding.
Parents, many of whom already feel ignored by a system where battling for basic services seems to be taken for granted, say they are fearful of the consequences of speaking out about how difficult it can be to cope. More than 100 parents and campaigners this week gathered outside the local headquarters of the Health Service Executive in Kells to protest at the State's treatment of the O'Haras. Conversations among the group were filled with different versions of one question: will the same thing happen to us?
"People are literally scared stiff," says Seamus Greene, the chairman of the National Parents and Siblings Alliance, one of the groups involved in the protest. "I just got a phone call from a woman who lives in a fortress at home, where her son has major behavioural problems. She was ringing to say she was afraid her son would be taken from her. But someone like her needs all the help and support she can get from the State. Yet now she's afraid to even ask for it."
He adds: "What worries me most is that the O'Haras are articulate, middle-class people, surrounded by supporters. So what happens to the people who aren't as articulate and don't have the support network that they do?"
The Health Service Executive (North Eastern Area) has declined to comment on the case except to say that care orders are taken out in the interests of the welfare and safety of children. While the precise reasons for the local health authority's actions have not been publicised, campaigners are quick to point to the lack of health or educational services for autistic children as playing a central role in the series of events that led to the O'Hara children being taken into State care.
Two of the O'Haras' youngest children don't have a school placement, while they have to pay privately for speech and language therapies and other services. The Co Meath couple, who say they are forced to survive on a few snatched hours of sleep a night, say their battle to secure services for their children has turned into a blur of correspondence with officials, searches for therapists and assessments which don't result in needs being met.
There are many families in a similar situation to the O'Haras. The number of parents seeking appropriate education services and therapies for their autistic children has grown dramatically in recent years due largely to increasing awareness that, with early intervention, many children can be rescued from the worst effects of the condition or can have their diagnosis changed.
Most schools or home programmes which provide one-to-one education for autistic children have been established largely due to lobbying by parents or High Court proceedings.
"There is something fundamentally wrong with the system," says Colm O'Carolan, who has been seeking appropriate education and therapy for his 14-year-old autistic son Lewis for two years. "You have clerical officers making decisions on issues which they have no comprehension of. Yet these are decisions which are affecting people's lives."
As if taking care of a child with autism isn't energy-sapping enough, finding the stamina to battle for what your children are entitled to can push parents over the edge, says Mikala Gourney.
"It's very depressing. You're up all night writing letters, you're looking for therapies. We don't live. We just exist. The health board seem indifferent to us. They don't seem to care. But what about our children's rights to be allowed to reach their full potential?"
The Health Service Executive yesterday declined to comment on the status of services for children with autism in the State. The Government, however, has made much of the last Budget, which promised to spend a record amount on services for people with special needs.
The gap between what parents want for their children and what the State is providing is reflected in the number of court cases being brought against the State. The Department of Education has confirmed it is facing 110 High Court cases in which parents claim their children's inability to access appropriate education or therapies is an infringement of their rights. It has settled almost 130 cases since 1996.
Against this backdrop, support groups are taking an increasingly sceptical look at the Government's Disability Bill which, they say, plans to either refuse rights or sharply limit the grounds upon which rights of any kind would be meaningful.
Tellingly, they say, it would block off the courts as a right of access for some categories of people whose needs have been assessed, but not met, by health authorities.
The Government, however, insists that the new legislation represents a major step forward for people with disabilities, introducing rights to needs assessments and putting in place complaints and appeals procedures for people who feel they are not receiving adequate services.
The O'Haras' case, meanwhile, has become a lightning-rod issue for the disability community, capturing all the fear and frustration of a section of the population which feels increasingly ignored and isolated by the State.
"My husband said to me last week on his way out to work to have a bag packed, to make a quick getaway in case they came knocking at the door," says Mikala Gourney. "That's what it's like. I keep getting flashbacks to what happened on the Friday night. On and off I'm okay, but then I sit down and cry. I can't shut off the pictures of what happened.
"I went over to the house last Sunday and it was like a morgue. It's one of the most traumatic things that can happen to a parent: to have your children taken from you when you've done everything you possibly can to help and protect them. You don't need to be found guilty of anything. That's the most frightening thing of all."