Derry family at 'breaking point'

A Derry mother says her family is at “breaking point” due to the absence of respite provision for children and young people in the city.

Speaking to The Derry News, Sarah-Lee McGuinness, whose 16-year-old son Noah was born with an extremely rare genetic disorder, said the ongoing closure of Rosebud Cottage had exacerbated the situation.

Rosebud Cottage is a four-bed short-term respite centre situated in the Pennyburn area of the city. It has been closed since the end of May.

A spokesperson for the Western Health and Social Care Trust told this paper: “The short break provision for children and young people’s disability service at the four bedded Rosebud Cottage (Northern Sector) was temporarily postponed at the end of May 2025 to support a medium term placement.

“The Trust had anticipated that Rosebud would reopen to provide short break provision in the Autumn. Unfortunately this has been further delayed and we sincerely regret the impact this is having on families,” said the spokesperson.

According to Sarah-Lee, Noah is fully dependent. He is nonverbal and has severe learning disabilities and behavioural issues.
Noah’s grandmother, Teresa McDonagh, who has two adult children with the same genetic disorder, described Sarah-Lee as “walking the walk at the minute because there is no respite, there is not one day of respite for anyone under 18 in the city”.

Teresa added: “Previously Noah would have gone to Rosebud Cottage but it is not available at the moment and there is nowhere else.

“If one family goes into crisis, which can happen to any family at any time, that knocks the whole respite system down. Nobody else has a chance.”

According to Sarah-Lee, Noah has been entitled to respite for about eight years, however, in that time, he has never received his full allocation.

“The first time it was because it moved. It used to be provided in the cottages over in the Waterside but that closed down because it was moving to Rosebud Cottage, and there was nothing available. We weren’t even offered day care, nothing,” said Sarah-Lee.

“The lack of respite affects Noah as a person because his world is so small,” added Sarah-Lee. “He is only in the house and school. He can’t cope with very much else outside. He gets really overwhelmed. He is really, really sensory. He is a runner so taking him out needs two people. He either needs to go in a pram for his own safety or a wheelchair. Essentially, if he wants out, he has to have two adults with him.

“Noah gets really overwhelmed and because he is nonverbal he can’t even tell you what is overwhelming him or why he is upset. It is noise, lights, everything.

“He would prefer being in the house but even when he is in the house, he prefers his own company. He has certain spots in the house where he stands. He doesn’t really interact. He has a twin brother and sister who are nearly ten and he doesn’t interact with them. He would interact a tiny bit with his daddy, Declan, and me but that is because we are initiating the interaction.

“Mentally he would be a baby, He is an infant in a 16-year-old body. For Noah, respite is his only other chance for the social interaction which suits his needs.

“The carers are really good with him. When he goes to respite, they pair him up with the other children there. Respite is the only social thing he can go to and he can cope with. It is invaluable for Noah.”

Not only is the absence of respite provision for Noah impacting him, it is affecting his whole family.

“We have twins who are nearly 10. My daughter has autism and we are waiting for a learning disability diagnosis for her. With Noah’s issues, we can’t really open her world up a lot because we are trapped in the house with Noah because he doesn't like anything,” said Sarah-Lee.

“To try and let her see the outside world and help her cope better, we can’t really do that if we have nobody to look after Noah,” she added, “and that is making her world smaller”.

“Her twin brother is also waiting on an autism diagnosis. He has anxiety and central processing issues and it is the same thing, he is not really getting the chance to get out into the world to do stuff. Declan and I just don’t have the time to give the twins what they need because there is no respite provision for Noah.

“Noah got respite in Rosebud Cottage in the spring, nearly a year to the day he had previously got it. We have had nothing since. The Trust doesn’t even offer you so much as a couple of hours respite. Families, carers are just left. Every year there is a family that breaks down.

“There are families on the verge of breaking down as we speak and they need to have something in place but money is not being put into respite provision for children and young people,” said Sarah-Lee.

Teresa described the situation as “emotional blackmail”.

“They know the families will do it anyway,” she said. “All of our MLAs and councillors, every last one, know exactly what is going on but I don’t hear anybody speaking out for the most vulnerable in society,” she said.

“And my son and Sarah-Lee are going to pay a price, they are going to be a burden on society in the future in terms of their mental health if something is not done.”

Agreeing, Sarah-Lee said: “As a family we are at breaking point constantly. It is the lack of sleep. The mental distress. We are dealing with Noah’s behaviour 24/7. It is constant care when you are not getting any respite. He also requires physical personal care.

“Our parents are older now and they are helping as much as they can but it is very limited because Noah is so big and he is so strong,” she added.

“We are not getting a proper break. Mentally, it affects every aspect of your life. You are constantly tired. You constantly feel down. I am about to have a breakdown.”

Teresa said as a grandmother looking in on the situation her “heart is broken”.
Sarah-Lee added: “The situation is complicated by the fact the respite provision is as and when. It is given to you but it can be taken away at any time. They tell you that.

“This means we can’ t do anything as a family. Somebody always has to stay at home with Noah. We have had to cancel holidays. We have had to cancel going to weddings. That affects you as a couple as well.

“The money carers are saving the Government a fortune. If that same money, even a bit if it was being put into supporting families, it would make a phenomenal difference to them.

"Half the families would not have to go into crisis and be broken up, with children being put in care. People are at breaking point. The decision-makers don’t understand, as the children get older, they have the same problems. They don’t grow out of them. They get bigger and stronger and we are expected to cope with it. It is a disgrace.”

The Trust spokesperson added: “The Trust continues to provide regular updates to parents via meetings regarding short break provision for children and young people disability services.

“The Trust provides respite through self-directed support arrangements and is based on an individual assessment for each family. The assessed need of any family can change over time and regular reviews are built into the process.”