'I'm desperate': The parents who can't access summer childcare for disabled kids

‘I’ll just have to tell everyone I’m not available all summer,’ says Kate Skelton, a mum of four. ‘It all just feels endless.’

As summer approaches, parents everywhere are scurrying to find places to send their kids for the six-week break.

While many children can attend camps or effortlessly be enrolled in childcare settings, parents of children with special education needs (SEN) and disabilities are finding it nearly impossible to secure an appropriate placement for their children.

Kate lives in Bromley and is a mother to four children, one of whom has a rare genetic condition that has resulted in cerebral palsy, autism, and global development delay. While her daughter Annabelle is technically seven years old, she is cognitively more like three and requires one-to-one care at all times.

‘I’m really worried about the summer and how we are going to manage from a childcare point of view,’ Kate, who also has twins aged three and a ten-year-old, tells Metro.co.uk. ‘It’s going to be really challenging.’

Annabelle, who thrives on consistency and routine is about to have her world turned upside down for six weeks, something Kate fears will send Annabelle into frequent meltdowns.

‘In lockdown, when her specialist school shut, she had a terrible time and regressed badly,’ says Kate. ‘She wants attention all the time and when she doesn’t get it, she will display challenging behaviour, like head banging.’

Kate would love to be able to send Annabelle to a specialist camp or club for the summer but hasn’t found any appropriate ones that would take Annabelle.

‘There are some specialist clubs, but they won’t take any children who are incontinent,’ Kate says with frustration. ‘She is ruled out of those and it’s a shame because some of them are really good.’

After a long battle with her local authority, Kate secured 14 hours of respite a week during summer holidays, but it is only a drop in the bucket compared to what she and Annabelle needs.

With all the kids home in the summer, Kate finds it hard to manage given their diverse set of needs. Annabelle requires constant supervision, her three-year-old pair of twins are typical toddlers who never slow, and her ten-year-old is interested in totally different activities than his siblings.

Kate explains: ‘Trying to plan an activity we can all do is really hard. And then it is really difficult to take all three out.

‘I was at the park recently and they all kicked off, fighting and crying and I didn’t know who to go to first. It’s just impossible.’

Although Kate has recently picked up freelance journalism again, she knows work will take a total backseat without additional childcare options for Annabelle.

Constantly feeling she is in a state of fight or flight, Kate is increasingly stressed and exhausted. Adding in the worry of summer holidays with severely limited help with Annabelle only adds to the pressure Kate is under.

Kate says: ‘It could be so different. The right support would just allow us to have a little bit of breathing space, time with our eldest child, and time with the twins. It would be invaluable.’

I just feel like I’m getting nowhere

Kate isn’t the only one navigating this impossible challenge – 80% of parents who have children with a learning disability struggle to access support services during the summer holidays, disability charity Mencap found. Parents may find it difficult to afford and find appropriate care, or they may lack confidence that a holiday club can meet their child’s needs.

‘Many families with disabled children report that childcare and holiday clubs can be unsuitable, and availability limited,’ says Jesslyn Parkes, senior parent adviser at Contact, the charity for families with children who have special educational needs and disabilities. ‘Although childcare settings and holiday clubs are meant to welcome and include children with SEN, in practice this is often not the case.’

Where there are spaces available in appropriate placements, parents often can’t afford the high cost of specialist care or one to one support.

‘It can cost more to provide childcare or summer holiday clubs for a child with SEN,’ says Parkes. ‘Families of children with SEN can pay eight times more towards childcare costs than other families, making it unaffordable for many.’

Local authorities have said that although they know it is their duty to provide childcare for all, a third admit there is not enough childcare for kids with SEN in their area.

‘We need to stop the disadvantage for children with SEN from an early age,’ urges Parkes. ‘Government can help by increasing the child disability addition under Universal Credit to enable more families to afford holiday clubs and childcare. There needs to be more funding for local authorities and childcare providers to improve the quality and number of places for children with SEN.’

Sharon Calcutt Cheadle is gearing up what will most likely be a summer spent caring for her two children, Elliott and Kaia, both who have SEN. Elliott is six and has Down’s syndrome, while Kaia is three with Dandy-Walker syndrome.

While Kaia is relatively low needs at the moment, Elliott requires constant attention. During school term, he attends a special school, but Sharon hasn’t quite wrapped her head around how there is virtually no support during the summers.

‘He is quite cute, and quite hard work,’ the 42-year-old mum says. ‘I love him to pieces, but he is exhausting.

‘When it comes to the holidays, he really struggles with the lack of routine.

‘Everything changes for him. He has meltdowns and struggles to focus because he doesn’t know what is coming next.’

Right down the road from Sharon is a specialist holiday club that runs for three of the six weeks in the summer holidays, but technically her address is not included in the catchment area for Elliott to be accepted.

‘It’s really frustrating because there is nothing like that in our borough,’ says Sharon.

Although Sharon has started working with the school and PTA to try and offer something for families, she says there is currently nothing suitable for Elliot and other children with SEN.

‘I’m desperate,’ Sharon sighs. ‘I’m a freelance production stage manager, but in the summer, I just have to stop working. It’s a big financial hit.’

Although Elliott has been given hours of respite care each week, Sharon feels that isn’t enough for his needs.

‘We need support,’ Sharon says. When she approached the council with her requests for more appropriate placements during the summer, she was told that should speak with her social worker.

She notes: ‘But we don’t have a social worker because ours left, and he hasn’t been replaced. That was six months ago. I just feel like I’m getting nowhere.’

Sharon is one of many parents with SEN children who want to see change. They want holiday clubs and childcare placements that can meet their children’s needs. Ones with good communication, welcoming attitudes, and inclusive activities.

‘This isn’t just me,’ Sharon says. ‘I’m standing up for all of us. This is an equality thing.

‘Why doesn’t Elliott deserve these fun things in the summer holidays when other kids his age do?’

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