Tentative welcome from Ben’s mum on new care commitment

THE mother of a 13-year-old boy with special needs who was told her son’s 24-hour care could only be catered for in Dublin or Scotland, has given a tentative welcome to a new commitment from the Western Trust.

Ciara Gilliland, from Victoria Bridge, this week admitted that she feels a little more positive after being told son Ben O’Neill will be able to be cared for closer to home.

However Sinn Féin MLA Maolíosa McHugh has described as a ‘breakthrough,’ agreement by Trust to facilitate Ben staying on at Avalon House Respite Centre in Omagh until long term alternative care, agreed by Ciara, can be found.

“It is positive for now but we still don’t know what his future holds,” mum, Ciara remarked.

“I won’t agree to him going far away. I want somewhere in Strabane or Derry where he can live but from where he can still go to school. It has to be somewhere local.”

Currently Ben, who has Kabuki Syndrome, a rare genetic disorder and who has learning as well as physical disabilities, remains in care in Avalon House. However previously, the family had been told this facility could not accommodate Ben indefinitely and that he could be relocated to a more permanent facility, either in Dublin or Scotland.

Last week, Ciara appealed to the Health Minister and the Western Trust to provide a suitable long-term facility for Ben and other children like him, where they can still be close to their families.

“This would make all the difference, especially for Ben, that he’ll be able to keep going to school,” Ciara continued. “And for us too as a family, from now we’ll be able to go and visit him at Avalon.”

On Friday Maolíosa McHugh, along with party colleagues, Orfhlaith Begley MP and Cllr Michaela Boyle met with Ciara and officials from the Western Trust.

“By agreeing to facilitate Ben staying on at Avalon until long term alternative care, agreed by his mother, can be found, the Trust has provided re-assurance that Ben will not be uprooted from his family and school at Knockavoe and put into a care setting far away,” Mr McHugh explained.

“I want to take this opportunity to pay tribute to Ciara who has worked like an absolute Trojan for the last number of weeks to get Ben’s story out there…

“I will be taking the opportunity to highlight Ben’s case directly to the Health Minister in the Assembly tomorrow and in doing so highlight the urgent need for him to ensure that adequate residential care provision for young people with complex needs is made available locally.”