Support for local disabled children is disappearing

THE parent of a local child who used to rely on occasional short-term respite stays at Omagh’s Avalon House has described the collapse of these services as “driving local families to our wits’ end.”

Short-term respite services have been a ‘lifeline’ for the families of local children with complex needs, many of whom, as is case with the child of the parent we spoke with, exhibit “extremely challenging behaviour daily.”

Speaking with the UH, they said, “We are mentally, emotionally and physically exhausted, and it has been months and months since we have had any kind of respite, and none of us (referring to the many familes who depend on Avalon) know when, or if, we will get it again. The service was a lifeline and it’s been all but taken away.

“When Avalon House offered respite, we could plan a day away somewhere, or even just some time to recharge. It made all the difference. All that was required was to fill out a form and request days a few weeks or months in advance. It was a fantastic service.

“But since the service was stopped, everything has changed. We are coming into summer and we can’t even plan for any kind of respite. We feel that the Trust is forcing us parents into making decisions we don’t want to make, and decisions we shouldn’t have to make.”

During the pandemic, some of the beds at Avalon (all of which were previously dedicated to short-term respite stays) were given over to children with learning difficulties who needed long-term, residential care. Parents believed that, when restrictions eased, these beds would then return their original purpose of short-term respite.

However, when restrictions eased, the number of beds available for short-term respite had diminised. But, still appreciative of some respite rather than none, parents “clutched at straws”, essentially taking what they could get. But now things have changed utterly. The Western Trust has decided to use all three available beds in Avalon House to care for children in need of long-term residential care.

In an effort to impress upon the Western Trust the role that Avalon played in helping their families maintain a healthy home-life, a group of parents demanded a meeting. The meeting, however, bore little fruit.

“My heart goes out to those families and those children who are getting residential care at Avalon House,” the local parent said.

“I know how hard things can get. But we are all in the same boat and we need all need some kind of respite service. We are truly at our wits’ end.

“I feel that it’s time that the Western Trust stood up and took notice of the situation we are in. We live very scheduled, hard and challenging lives that the outside world doesn’t know about.

“We protect our children in that world, and we aren’t the kind of people who like to openly talk about it. But the current situation can’t go on. It’s made us feel like neither we or our children have a voice. Disability services are bad enough locally, and this doesn’t bode well for the future.”

Is this the life our children are expected to live, with nothing for them?”