Ciara Gilliland, from Co Strabane, has spoken of her fears that a judge could still force a move to Dublin for her son if a permanent solution can’t be found closer to home.
Ben O’Neill was diagnosed several years ago with a rare genetic condition known as ‘Kabuki’ which has meant he has learning difficulties, is non-verbal, is double incontinent, and has several physical disabilities including a curved spine and a limp when walking.
He also presents challenging behaviour at home – including lashing out at his loved ones.
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In June, his mother sought help as the family struggled to cope with Ben’s physical strength, and he began to live in a specialist centre in Omagh – a short drive from the family home near Strabane.
But health authorities have repeatedly insisted this is only a temporary solution.
As the Journal reported last week, his mother fears he will be sent to live in a specialist facility in Dublin – away from the family home and the special school he attends – and has issued a direct appeal to Health Minister Robin Swann to intervene and help find a “forever home” for Ben.
While Mr Swann’s department has said it is unable to comment on individual cases, his UUP colleague Darren Guy spoke during a recent debate on the issue in the Derry and Strabane Council to say he had spoken with the minister about Ben’s case and that Mr Swann will “continue to press” the Western Health Trust to find a solution.
In the meantime, Ms Gilliland has said that health bosses have now confirmed to her that Ben can continue to live in the respite centre in Omagh but only until a permanent solution can be found.
“There’s a big retrieval meeting coming up – I think it could be this week,” she said.
“They are still talking about Dublin to me.
“I have told them no, he’s not going. They said ‘what if we got the Dublin people up to talk to you’ and I said there’s no point because he’s not going away down there.
“It would be moving Ben away from everything he knows. I don’t want him to go anywhere. I want him to stay in Derry, Strabane or Omagh – somewhere where he can still travel to his school.”
Asked what might happen if she refuses to agree to the Dublin move, the worried mother said: “They could end up having to take me to court for a care order. If I don’t agree with them and they don’t agree with me then a judge will sort out a decision. It’s all still very up in the air.”
She added: “So yes, it’s good news that he can stay there for now but the long term isn’t sorted yet. He still hasn’t got a forever home.”