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Parents create 'lifeline' summer scheme after SEN provision fears

Robbie MeredithEducation and arts correspondent, BBC News NI
BBC A woman in a grey top has her hand around a girl with long brown hair, wearing a red t-shirt. The woman has black glasses and long brown hair. They both smile as they look of-camera to the right. Behind them is a white-walled kitchen with a grey fridge in the middle. BBC
Karen Ryan is one of the founders of Sensability and helped set up the summer scheme.

A special summer scheme for children with severe learning disabilities has been described as a "lifeline".

The week-long scheme in Lisburn was set up after others in special schools were put in doubt earlier this year.

It was funded by Lisburn and Castlereagh Council and run by the Sensability organisation for almost 20 children and young people aged five to 19.

Those who attended had complex needs and conditions which require nursing care when they are at school.

A long white table sits a dozen people. There are plates of food in-front of each person. The table is in a small white-walled room. There are half a dozen bunches of flowers down the centre of the table.
The scheme ended on Friday with a special lunch enjoyed by young people and their families

Sensability is a charity which supports young people and adults with severe learning disabilities.

Separately, Stepping Stones Northern Ireland ran a six week youth service summer scheme also supported by the council.

Earlier this year, some summer schemes for children with Special Educational Needs (SEN) had been thrown into doubt due to concerns about the availability of nursing staff.

The Education Authority (EA) had said it had to cancel them due to "concerns about the adequacy of health care provisions" for children taking part.

The assembly was recalled at Easter over the furore and the decision was reversed.

But Sensability and parents in Lisburn decided to press ahead in organising their own to give families certainty that their children would have activities to go to over the summer.

It has been running at the Grove Activity Centre in the city.

It ended on Friday with a special lunch enjoyed by young people and their families.

A woman with short brown hair smiles at the camera in a grey-tshirt, while her son, who is on her left, sitting on her knee looks slightly of camera to the right as he wears a bright yellow t-shirt. They sit in a kitchen with green panelling and a white floor.
Kristin Hutchinson said structure to her sons day is so important

Many of the children and young people who attend are wheelchair users, non-verbal and have medical needs.

Karen Ryan's 17-year-old daughter, Emily, was born with a rare chromosome disorder and has profound needs.

She is non-verbal, tube-fed and is a wheelchair user, who attends Parkview Special School in Lisburn.

Karen was one of the founders of Sensability and helped set up the summer scheme.

"A lot of the attendees are wheelchair users, they would have epilepsy or diabetes, they would require tube feeds, they would be non-verbal and would need all of their personal care needs met," she said.

Sensability paid for facilitators from Diverse Minds Events to provide sensory activities for those attending, but parents go to the scheme with their children.

"So they can be called to attend to any medical needs, any feeds, any personal care needs," Karen said.

For Kristin Hutchinson, being able to come with her six-year-old son Adam who has severe learning difficulties, has been "vital".

"Adam, when he has no structure at school, he is just so dysregulated," Kristin said.

"He's been quite distressed every day this summer, which is distressing for me.

"I would very hard to find activities or things to do with him that would help regulate him."

She said it was great to have time to herself has really helped her.

"I left yesterday feeling a lot lighter than I went in."

A woman with long blonde hair kneels down and smiles at the camera, alongside her son, who has short blonde hair and sits in a wheelchair, wearing a blue t-shirt. There is a white wall behind the pair. The woman, who wears a black t-shirt, is on the left.
Michelle says the scheme has shown a huge change in her son Alfie's behaviour

Michelle McCreadie's son Alfie is eight-years-old and has severe learning disability and autism and he's also peg-tube fed.

"He's quite a complicated little lad but he's our shining star and we love him. There's not very much out there provided for children who have the kind of needs that Alfie has.

"I've seen a huge difference in Alfie's behaviour, he's joyful this week.

"He's not distressed, he's not upset, he's so happy to come here and spend time with the other children and have fun, as he should be able to in the summer time."

In a sports hall with a blue floor a woman in a white top smiles to the camera as she has her hand on the back of her daughters wheelchair. The woman, who is kneeling beside her daughter is on the left of her daughter. Her daughter looks of to the right of the camera as she sits wearing a lilac top.
Rebecca Guist, whose daughter Elsie attends the scheme, said how important it is for her child to be in a social environment

Rebecca Guist's 10-year-old daughter Elsie especially enjoyed activities in the sensory space.

"Elsie is non-verbal and a wheelchair user and requires one-to-one assistance basically 24 hours a day, and she's wonderful," Rebecca said.

"There's nothing of this kind like it for our children. It's so important for our children to be seen in this environment that is social and also sensory-based.

"She has her own wee set routine of what she likes to do when she's in here. It just makes the day a better day for everybody."

A man with short brown hair and a short brown beard and moustache smiles to the camera.
Graeme Dickson has two children who both attend the scheme

Graeme Dickson's 14-year-old son George, who uses a wheelchair and has severe learning difficulties, and his 10-year-old daughter Jessica, both attended.

"To find out that this was taking place this week, was really quite a lifeline," he said.

"My daughter Jessica made a new friend. In her school set there's actually only one pupil in the class that can speak."

Normally it's difficult for Jessica to make new friends, her dad said, but "she's made a new friend this week," he added.

"It's been brilliant."