Autistic teen lives in facility 90 miles from home

Lorraine Smyth with her son Ruairi

A 13-year old-boy with autism has spent two years living in a facility for children with learning disabilities, 90 miles away from his home.

Ruairi Smyth's parents insist the only reason he is there is because there are no other services available locally to support him.

Neil and Lorraine Smyth from Bellanaleck, said their son has effectively been "locked away" and that no child should be living in a hospital.

They have accused the Western Health Trust of failing to put a plan in place that would allow Ruairi to return to their County Fermanagh home.

The trust said it it does not comment on the care of individual patients or clients due to confidentiality/privacy reasons.

Ruairi has autism and ADHD (Attention deficit hyperactivity disorder), and as a result of his learning disability he has severe anxiety.

When he was 11, the family reached a crisis point and they took what they described as a "heartbreaking decision" for him to be admitted to the Iveagh Centre in Belfast.

It is a purpose-built facility that provides assessment and treatment services for children with learning disabilities.

His parents, who also have a daughter, visit three or four times a week and speak to him every day on FaceTime, but they said his absence has "left a big gap in our family".

Ruairi has been living at the Iveagh Centre in Belfast for two years

Lorraine said a lot of tears have been shed over the last two years, but looking back, it was the best decision for their son.

She said Ruairi had received "fantastic" care and the dedicated staff at the Iveagh Centre had supported them and become like a second family.

"It was almost like a grieving process in a sense because there was this massive loss to the house and now with the help of Iveagh we can see the hope," she said.

Neil Smyth (left) says he believes his son Ruairi (right) is ready to come home

Neil added: "They have really got Ruairi to a point where they understand all his needs and what his needs are to return home.

"I think the Iveagh Centre have got him to the point now where he's really ready to come home."

For that to happen, an extension needs to be built to their home to create the right environment and Ruairi also requires a support team.

Neil says that when Ruairi asks when he can come home the couple are not able to give him an answer

The couple has planning permission and some funding from the Housing Executive, but they accuse their local health trust of not having a plan in place for Ruairi to leave hospital.

They claim the Western Trust told them 12 months ago that a business case was being prepared, but they now believe it does not exist.

"When we ask why there's been no business case it's been put down to management problems, senior management issues," said Neil.

"It's unacceptable that as a result of that Ruairi is still up in Belfast, not at the home where his family is.

"His liberty is being deprived and us as a family, we're just not together.

"These are the most vulnerable children in our society and they're effectively being locked away, so it's time that that stops."

Lorraine says it is unacceptable for a child to live 90 miles away from their family

The couple believe Ruairi's condition has deteriorated with the uncertainty.

They said Ruairi asks them when he can come home but "we can't give him an answer".

"Without an end date that just makes his anxiety a lot worse," Neil said.

"He is constantly thinking, 'Will I be here next year, will I miss this, will I be here when I'm 14,15,16,17?'."

Neil and Lorraine Smyth have decided to raise the money they need to build the extension to their home themselves

Neil and Lorraine feel the Western Trust has let them down.

"I think that this is highlighting our lovely County Fermanagh, such a lovely place to live, yet there is not one decent service for children with disabilities and something has to change," Lorraine said.

"It is unacceptable for a child to live 90 miles away from their family and I just ask the question: "Why?"

"Why are there no services? Why can't you recruit certain skill sets?

"It's not impossible, but to come in and tell parents who are desperate to get their child home that they don't think it's possible, it's not acceptable.

"You will go to the ends of the Earth for your child and when he's sitting asking you a question: "Mummy when can I come home?" and I can't give him an answer, I can't even explain how that makes me feel.

"It just breaks my heart, it breaks my heart."