‘We are so tired of fighting for our children’ say Derry parents as respite facility closes
Parents of children with learning disabilities have expressed their anger after respite services for their children have been temporarily closed.
Rosebud respite cottages are a lifeline for 35 families in the local area but are set to close for ‘up to three months’ to facilitate a child who is in crisis. The facility was reopened less than a year ago after closing for 12 months for a similar situation.
Alexandra Finlay’s 13-year-old son Jack and Rachel Browne’s 11-year-old son Oliver both attend respite.
Rachel explains: “I received a letter to tell me that the Rosebud cottage would be closing and my social worker asked if I would be willing to send Oliver to Omagh for his overnight stays .
“The last day Oliver was in respite, he had to come home early because he wouldn’t settle and they didn’t want him to have a bad experience to put him off in the future. If he was in Omagh when that happened, I would be stuck. I have other children at home so would I be expected to lift my children out of bed in the middle of the night to drive to Omagh to collect him? He would also be spending an hour in distress while I was on the road; even though they’re promising him I’m coming, he doesn’t believe that until he sees me.
“They didn’t provide more information except that it would be closing and that Omagh was an option.”
Alexandra added: “I refused this (Omagh) in the past when they had temporary closures. Our children also have a right to go to school. You can’t expect children to have to travel the whole way to Derry first thing in the morning and then back again in the afternoon or the likelihood is they wouldn’t be allowed to attend school. Respite is a really important part of their routine and if they went to Omagh, there would be different staff, a different environment that they aren’t used to yet. It’s just not appropriate and does not meet the needs of our children.
“We also are in a pandemic, we are already dealing with reduced services which means shorter stays, reduced notice, not being able to request dates, no weekends, which is vital to spend quality time with other children.
“They are also having staffing shortages where they can’t provide for that. So we were already on a reduced service and now they’re talking about taking it away completely.”
The Western Health and Social Care Trust were contacted about the closure and they replied: “The Trust does not comment on individual cases in the interests of confidentiality.”
Respite is an essential service for children with learning disabilities. It has countless benefits for the whole family including preparing the children incase of an emergency.
Rachel explained, “I didn’t want to send Oliver to respite at first. He was very difficult to deal with a few years ago and my sister tried to push me to do it but I was quite stubborn saying that I could take care of my child myself - that’s something all parents of children with disabilities go through. But I started to think about it and now I send him so he can get used to it if I ever do become a family in crisis.
“We could suffer a loss in the family or someone could get injured or ill and this means Oliver could go to respite and I would know that he is happy and secure and I can deal with what I need to deal with.
“Most parents have other children too. My daughter Charlotte is a year younger than Oliver and, although she loves Oliver to pieces and helping out with him, she really looks forward to him going to respite so we can spend some time together, just the two of us. So respite is as important for her as it is for anyone else.”
The parents understand that this temporary closure of the respite facility is inevitable but they want the Trust to plan ahead to ensure that this doesn’t happen next time a family goes into crisis.
Alexandra said, “The Trust are very keen on ‘fire fighting’ instead of providing long term solutions that will work for everyone in the community. They can’t take services away from a group of people to provide for one when they have other options at their disposal and they chose not to acknowledge it time and time again.”
Rachel added, “There are enough buildings in Gransha grounds that could be converted into a crashpad for families in crisis. We don’t plan a crisis and we don’t all wait for a time that’s convenient - all 35 families could go into crisis at the same time. So if they had a separate facility that is used specifically for crisis, all the families would be catered for.
“Rosebud or any of the short term stays won’t have to close down each time it happens.”
She said she believed the families had been impacted by funding cuts.
Alexandra said, “To the best of my knowledge, it was around five or six years ago as well that there was another child in crisis who needed longer term care outside of their own home and the Trust pledged their commitment to provide a facility for those who need longer term care outside of their own homes.
“They said that facility would be ready within a year and it has never materialised. It has been going on for a very long time and it is something that our children and our community do need. As Rachel said, any family can go into crisis and all we are asking is now that they hear us and they do the best thing for our children.
“Parent and carers have to fight for absolutely everything for our children.
“We fight from getting a diagnosis to getting suitable educational provisions, to fighting for supports and services. It’s too much pressure. We are so tired of fighting for our children. We can’t take much more.
“We are going to continue this campaign so that the Trust will hear us and know that we are not going to lie down.
She said parents have complained to the Trust and reached out to MLAs and councillors from various parties, adding: “They are all looking into it. I personally have made a referral to the Northern Ireland Commision for young people. “Maybe we won’t stop this closure but we would like them to think about it next time. It would be nice if the Trust would plan ahead, like I said, this isn’t the first time it has happened and it won’t be the last.
“I would love to hear that there is a family in crisis who have been provided for without having to remove services from the other families.”
Meanwhile, Ciara Gilliland, the mother of 13-year-old Ben who requires constant care, has said health authorities have agreed to let him stay in a specialist respite facility near the family home in Strabane - but a forced move to Dublin could still be on the horizon.
She said that health bosses have now confirmed to her that son Ben can continue to live in the respite centre in Omagh but only until a permanent solution can be found.
Since her story featured in last week’s edition of the ‘Journal’ and on our website, it has also been discussed by councillors.