The parents of a 13-year-old autistic boy who has been forced to live in a purpose-built facility for people with learning disabilities in Belfast claim he cannot return home full time to Fermanagh until the Western Health and Social Care Trust draw up a business case, a document they say they have been waiting on for almost a year.

Neil and Lorraine Smyth from Bellanaleck say the delay means their son Ruairi must remain living at Iveagh Centre, over an hour and a half away, where he has been since he was 11 because of a lack of adequate support in the county for his needs.

Ruairi’s parents travel three to four days per week to see their son from his admission on June 6, 2018.

As his father explains, Ruairi was first diagnosed with autism when he was four years old.

“He has also been diagnosed with ADHD combined with a severe learning disability and suffers from severe anxiety. That impacts all aspects of his daily life, he has anxiety from the moment he wakes up.

“He has a picture in his head of how the day, the week, the year should go. He is a concrete thinker and doesn’t work well with unpredictability. He’s in Iveagh Centre and not having an end date is only adding to his anxiety,” Neil told The Impartial Reporter.

Ruairi suffers anxiety in all kinds of ways and this was evident when he was at home as preparing for family occasions such as a wedding or even a trip to the shops with his parents proved problematic.

“He gets extremely anxious about clothing, things that people take for granted; getting up, brushing his teeth, washing his hair, that all causes anxiety,” said Neil.

As a result of Ruairi’s anxiety and inability to express himself he was signposted to services in Belfast because there was “no support within the Western Trust” and the situation “reached a crisis point”.

Neil added: “From the day a child is admitted to hospital you are immediately planning for their discharge back home. It was very clear after a period of time that Ruairi would need a dedicated and robust support team at home and the right adaptations to the family home environment.

“That was identified by Iveagh and agreed by all the healthcare professionals, including the Western Trust,” he said.

The process of providing these key elements involves a business case but almost a year on and that vital document has not yet been produced by the Trust which means Ruairi must remain where is he, for now.

"Nothing has happened yet and we cannot move forward because it all hinges on the business case with the Trust. We first discussed this business case almost 12 months ago,” added Neil.

Lorraine claims the Trust’s “inability to effectively put a plan in place” means her son could now suffer a “delayed discharge”.

“As a result, we feel his condition is worsening because he longs to get home. They should have been looking at this all along, especially as we were keeping up our part of the bargain,” she said.

Lorraine added: “For the past 12 months it has been our understanding that we were proceeding with Ruairi being treated in the Iveagh Centre and that the Western Trust was working on the business case which would include funding for an extension onto the house so it meets Ruairi's needs.

“We were told at one of the many meetings we attend that the business case was ‘in draft form’ and ‘with the right people’. We have since found out that there is no business case because it just has not been done,” she said.

“I am angry, to tell you the truth,” said Neil.

“I feel so desperately sad and heartbroken and I feel traumatised,” said Lorraine, adding that they have come to the realisation that they have not moved forward.

"This has sent me into panic mode and we feel that we have no choice but to raise the money ourselves. We do not have that kind of money, what are we going to do? We have been working with the occupational therapist, Housing Executive and architect for months to the point that we are almost ready to go with these plans and the only thing that is holding us up is the money side from the Trust,” she said.

Lorraine added: “I feel that they have completely let Ruairi down, they haven’t done anything. We as parents feel completely let down and feel that Ruairi has not been treated early enough, it is unfair. We feel upset.

“In my view, the Trust is not fulfilling their duty of care to our son and as parents it makes us feel helpless and scared. We can see Ruairi going downhill the longer he’s away from home.”

“I need the Trust is to follow through with what they said the would do which is to provide a package of care for support in the community,” said Neil.

The family feel at this point they have no option but to fundraise to speed up the building work and to procure the necessaries needed to bring Ruairi home.

"We have decided that we cannot sit back and wait any longer for the trust as we believe the only person suffering is Ruairi," said Lorraine.

The Western Trust was asked to provide some reassurance to this family but refused to do so.
Instead, it issued this 18-word response: “Due to confidentiality/privacy reasons, the Trust does not comment on the care of individual patients or clients.”

The couple with the help and support of their families and friends have set up a GoFundMe page at https://www.gofundme.com/f/bring-ruairi-home