Mum sobs as autistic son is turned away from summer time vacation membership – with hundreds of disabled youngsters lacking out
EXCLUSIVE: Tens of thousands of children with special educational needs and disabilities are missing out on summer holiday clubs across the country, new research shows. The Mirror speaks to struggling mums on the brink
Zoe Hodgson with her four-year-old son Theo
A struggling mum has recalled the moment she broke down in tears when her son was turned away from a school summer holiday club, all because of his additional needs.
New reasearch from disability charity Sense reveals that just six percent of children with special educational needs and disabilities (SEND) in England will recieve holiday club support this summer.
The findings also show that one in 10 councils across England commission no holiday clubs for disabled children in their areas at all, leaving more than 61,000 children missing out.
The crisis is forcing some parents to quit their jobs to fulfil full-time care needs, while others are struggling to afford private support that can cost hundreds of pounds a week.
For SEN mums Zoe Hodgson, this harsh reality makes the summer holidays incredibly difficult, and she is devastated that her four-year-old son Theo misses out on socialising with others because of it.
Like many parents across the country, Zoe is currently waiting on Theo’s official autism diagnosis, something she calls a “long road” with extensive wait times for an assessment. And while she understands her son may need more help than neurotypical children his age, Zoe says her little boy can happily play with toys and gets on with other children. So being turned away from the club she had already paid for left her in complete shock.
The 25-year-old mum-of-two from Cardiff had spent £150 on a school holiday club for Theo to attend, and after filling out a form and paying the fee, Zoe believed Theo had a place at the day care. But when she made it clear during the drop-off he wasn’t yet toilet trained and had pull-up nappies on, she claims staff then told her that they ‘can’t have him’.
She tells the Mirror: “I told them ‘he’s not toilet trained, he’s got autism, like I mentioned in the form’ and that’s when they apologised and said they couldn’t have him.”
After being told it was their ‘policy’, Zoe felt a lump in her throat and broke down in tears. “I tried to hold it in, but as soon as they said he can’t stay I could feel myself getting all upset, and I felt so teary. It was just the reality check of it again. I’ve been struggling, and as horrible as it sounds I can’t even pay for a break.
“I can’t even pay someone to just take the edge off for a few hours and just keep him busy for me, so my daughter gets a break as well, because during the holidays, she hasn’t really had any one-on-one time with me because my attention has been so on him [Theo] and making sure he’s not destroying the house and not having meltdowns. It’s really hard.”
Luckily the mum has managed to make childcare work, but she’s deeply concerned about the limited support available across England. “Everyone in my family works, so it’s very limited on what support I get as my mum is in work and everyone else works full time,” she explains.
“Theo often manages to escape, so no one’s house is really suitable for him, and tall baby gates can be expensive as well as having to lock all the cupboards too. So it’s not that they can’t ever have him, but it’s always a question of ‘is it safe?’ because he can unlock doors, go upstairs and eat things he shouldn’t. You’ve literally got to watch him all the time, otherwise he’s a danger to himself and other people as well.”
The troubling new report from Sense reveals that more than half of parent carers across the country struggle to find accessible holiday clubs for their disabled children, leaving one in three financially worse off. Of those affected financially, almost one in five have been forced to leave employment altogether.
This is sadly the case for 37-year-old Kathryn Mulroy from West Yorkshire, who had to leave her job in mental health to support her three children, two of which have additional needs. “My oldest son Ashton is neurotypical, so he doesn’t have any disabilities at all and he’s nearly 16. But when he was younger and at primary school, the only way I could work during the school holidays was putting him into holiday clubs.
“I think they are absolutely fundamental, especially for single parents to continue to work and have a bit of a break during the holidays. But with my two youngest, there has never been an option for that at all.”
Kathryn’s nine-year-old son has been diagnosed with autism and a severe learning disability, as well as Pica, a condition where a person compulsively swallows non-food items. Her daughter Florrie, 8, was diagnosed with autism and a learning disability when she was four. Both Myles an Florrie are also non-verbal, making their needs more complex.
“Whe Ashton was little, I had my pick of different clubs such as outdoor ones, arts and craft ones but for Myles and Florrie there is nothing,” she explains.
“I had to give up work a few years ago anyway because of Myles’ needs not being met in school. I speak for all parents with disabled children of any kind, not just autism, that summer holidays particularly is the time that we need help and more support.
She adds: “It was hard to leave my job, it was my freedom, my time of being with adults and having some time away from being mum.”
Sense warns that the consequences extend far beyond disabled children missing out on summer activities available to their peers. More than half (57%) of parent carers say finding accessible holiday clubs is difficult, with many describing the impact on their finances, employment and mental wellbeing.
Away from home, Myles requires two members of staff with him to cater to his needs. So while he is offered four hours of respite care a week, Kathryn still struggles. “The place that I have found for him is private and extremely expensive, so his hours were dropped massively because the council had to pay more for him to go there, even though he’s a child that needs more support,” the mum says.
Every disabled child is entitled to an assessment for children’s social care support, and this can include support and funding to access holiday clubs and childcare. However, local authorities interpret their duties differently and thresholds for support vary widely between areas – leading to what Sense calls a ‘stark postcode lottery’ in provision, which leaves SEND children being unfairly excluded.
“Myles particularly gets turned away from a lot of places,” Kathryn explains. “I found a place in Bradford where they do holiday clubs for disabled children, but it’s group sessions, and Myles is two-to-one and quite challenging so he can’t go to that at all. I’ve never tried to get him into any of the mainstream sort of holiday clubs, because I know the answer would be would be no.”
The mum says one of the most challenging aspects for her is navigating taking her children out during the summer holidays. “Everywhere is busy, and for things like soft plays, trampoline parks, even normal parks, I have to take them early in the morning or in the evening, when I know that it’s not going to be full of children.”
The struggling mum admits that she “dreads” the six week break and struggles with anxiety in the build up, as she is constantly thinking of what she can do with her children. “It’s so stressful to have to be on constant high alert with zero help 100% 24/7, and a lot of the time with no sleep.”
Harriet Edwards, Director of Influencing at Sense tells the Mirror: “Sense’s new research has revealed the impossible struggle so many parents face as they try and fail to find accessible holiday clubs for their disabled children. Since unveiling it, we have received an influx of supportive messages from exhausted parent carers.
“Parents are sharing their own difficulties, how they have been forced to cut their working hours and their fears that their child is missing out on opportunities to make friends and have fun. Most of all, they are telling us how relieved they are that we are highlighting this long-hidden issue – because they face the same childcare crisis every school holiday.
“If parents need additional help, they should contact their local authority and ask for an assessment for children’s social care support, which can include support and funding to access holiday clubs and childcare.”
A spokesperson for the Department of Education said: “We’re investing over £600 million in the Holiday Activities and Food (HAF) programme to make sure children get healthy food and enriching activities over the summer. HAF is running across England right now and will reach hundreds of thousands of children by the end of the holidays.
“We expect councils to work with providers to plan how they include children with SEND, so no child misses out. Families can also benefit from our Great British Summer Saving scheme, with discounts on meals and attractions and free bus travel for children aged 5 to 15 throughout August.”
