Why These Children With Learning Disabilities Are Stuck at Home This Summer

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"The findings, from disability charity Sense, show that one in 10 councils commission no holiday clubs for disabled children at all, leaving more than 61,000 children in areas with no provision whatsoever.

Parents of disabled children have told ITV News that being left without access has been “gutting” for their children, and has left them financially strained.

Zoe Warner has two sons with complex needs who both attend specialist schools during term time but have been left without access to holiday clubs during the summer.

“They are very social boys, so they would love to be out accessing holiday clubs, but it’s just not very doable,” she told ITV News.

“As a mum, it’s gutting, because you want them to be able to access everything that they should be accessing.”

Zoe’s nine-year-old son, Aidan, has complex medical conditions including cerebral palsy and epilepsy. His younger brother, Kylan, has severe autism.

Zoe says one accessible option for Aidan has a long waiting list and would cost over £400 a week. But there are no clubs in the area which would be able to meet Kylan’s needs, even with a carer accompanying him.

“Aidan is a very social child so for him he'd love to access a holiday club, go and do something different, do a bit of arts and crafts or anything like that that a neurotypical or not complex child would be out doing, he would love to do,” she says.

Sense says the lack of access to care is having serious knock-on effects on parents. One in three parent carers told the charity the lack of accessible clubs had left them financially worse off, and one in five of those had been forced to give up work altogether in order to care for their children during the holidays.

More than a third said the struggle to find suitable activities for their children had harmed their mental health.

For Beth Smith, the lack of support for her 11-year-old son Jacob has left her “dreading” the summer holidays.

Jacob is fed and given medication through a tube, and is cognitively around 18 months old.

Beth says that although her council does offer provisions for disabled children, they haven’t been able to offer suitable provisions for Jacob, who needs assistance with toileting and a two-to-one adult-to-child care ratio.

“I do dread the summer holidays purely because there isn't anything that we can access,” Beth tells ITV News.

She says being out of a usual routine sends Jacob into crisis, causing behavioural issues and leading Beth to feel burnt out.

""There are days when I'm like, 'I can't do this' — it's really hard, but you've got to do it, because if I don't, nobody's going to,"" she says.

During the summer holidays, Beth provides Jacob with around-the-clock care, while also looking after his two younger sisters.

“I think we face a lot of judgment as well for moaning about it because ‘it’s your child, deal with it.’ But nobody plans to have a disabled child, nobody plans for this to happen.

“It’s the emotional load and the burnout that can come from care, on top of looking after our children and managing their care needs. It’s just not fair.”

Where clubs do exist, demand often outstrips supply. Staff at Leeds Mencap, which runs a holiday club for four-to-eight-year-olds with learning disabilities, say they cannot keep up with the number of families who need a place.

""A service like this is quite expensive to run, generally because staff ratios are so high,"" said Louise Maciag, family services manager at Leeds Mencap.

""Some of our families might have a child that is in desperate need of a place, but we just can't offer enough.""

Sense argues that the law already entitles every disabled child to support in tackling barriers to leisure and activities, but that provision varies starkly from area to area.

The charity is calling on the government to overhaul the social care system for the 1.9 million disabled children in England and their families, with new legal standards, a national framework and eligibility set at the same level across local authorities."