I can’t find summer care for my disabled son – so I have to drop £4,000 of work

If you’re a working parent one question has likely been popping up over the last few months – what are you doing with the kids over the school holidays? The juggle is very real – how do you entertain and care for your children for (at least) six weeks while also doing your job? Some people have colour-coded spreadsheets breaking down clubs and schedules, while others joke about needing a new mortgage to cover the cost of summer holiday camps. I unfortunately have neither. I’ve spent hours trying to find suitable childcare for my family, but despite priding myself on professional-level research abilities, I found nothing suitable for my nine-year-old autistic son who has special education needs and disabilities (SEND). Shorts Since my son can’t access mainstream clubs, I tried to find accessible private childcare and spoke to my local authority about council provision. I was hoping to find somewhere for even just a few days, or one day a week, but I couldn’t find any suitable clubs and the only local setting my council recommended was already full, having closed its waiting list months before. Now my answer to the question is not what I would necessarily want. “I’m cutting my hours and looking after them myself,” I say, bracing for what I know will be an intense few weeks, and the lack of income that will come with it, since being freelance means if I cut my hours, I cut my pay too. I thought this was a unique problem, but new research from disability charity Sense found more than half of parents of disabled children struggle to find suitable holiday clubs, and a third said this negatively impacts their finances. Of the families who are affected, a third, like me, are reducing their hours. Harriet Edwards at Sense says lack of suitable childcare has a significant impact. “Disabled children miss out on opportunities to make friends, have fun and be part of their community,” she says. “Parents are often left with no choice but to take unpaid leave, reduce working hours or give up work altogether to care for their child during the holidays. Too often, it’s mothers who end up carrying that burden.” Trying to find appropriate summer holiday childcare for disabled children is yet more stressful admin for parents, who are often already doing a huge amount of unseen work like chasing referrals, attending meetings and trying to access support for their children. Sense found more than a third of parents of disabled children say the struggle to find holiday activities negatively affected their mental health. Other research by campaigning charity Pregnant Then Screwed found parents of disabled children are the most highly stressed group when it comes to the holiday childcare juggle, and that they also have to pay the most if they can find any appropriate childcare. ‘As a self-employed person, I don’t get holiday pay, so working half my hours will mean I get half my usual income. Over July and August, I estimate I’ll be around £3,700 worse off than usual’ (Photo: Annabel Lee) Rachel Grocott, CEO of Pregnant Then Screwed says parents of disabled children are being disadvantaged twice. “First by the worst childcare availability in the country, and then when it does exist, it doesn’t fit their working lives, doesn’t meet their children’s needs and costs them more. No wonder they report the highest stress levels of any parents we surveyed. This isn’t a juggling act, it’s a system quietly pushing the families who need the most support to breaking point and leaving them to fall.” After my unsuccessful experience trying to find childcare, I decided to cut my work down so I could look after both my son and my daughter over the summer. As a freelancer, it’s relatively straightforward for me to flex my hours when I need to, but while that flexibility is useful, less work means less income. As a self-employed person, I don’t get holiday pay, so working half my hours will mean I get half my usual income. Over July and August, I estimate I’ll be around £3,700 worse off than usual. My parents will help us out for a few days, and my husband will take some leave to cover days when I need to work. But as he has a regular job, it makes sense for me to be the one to reduce my hours more. It’s not a coincidence that it’s me who has a less traditional job though. Many mothers move into self-employment and freelancing roles as it offers more flexibility and the ability to work part-time. However, it also comes with more precarious employment and lack of benefits like pension contributions, sick pay and maternity leave. Edwards says a combination of factors need to be tackled to close the holiday childcare gap. “At the moment, the system isn’t set up to support disabled children outside school, there’s a serious lack of funding and providers often don’t have the resources or confidence to include them,” she says. Through Freedom of Information requests, Sense found that only 6 per cent of disabled children currently receive holiday support which they are entitled to from their local authorities and 10 per cent of local authorities offer no summer provision for disabled children at all. As a result, a “stark postcode lottery is failing families”, Edwards says. “There are also challenges for holiday club providers themselves,” she says. “Many want to be inclusive, but without additional funding, they can’t always provide the extra staff or specialist support some disabled children need. As a result, some families are turned away or told a club can’t meet their child’s needs. And we also know that the more complex a child’s needs are, the higher the barriers become.” ‘I don’t want to sacrifice my career or my income because of a lack of accessible support for my child’ (Photo: Annabel Lee) Chrissa Wadlow, founder of SEND advocacy consultancy Sunshine Support says that while some private clubs will include disabled children, there’s an important distinction between willingness and capability. She experienced this personally, feeling elated when a childcare provider said they could support her child and then disappointed when staff did not receive the specialist training they needed, resulting in a distressing experience for her child. Wadlow also had to cut her working hours to look after her child, but she warns the impact extends beyond income. “Many women gradually lose their professional identity, independence and sense of who they are outside their caring role,” she says. “Access to suitable childcare is not a luxury or simply a matter of convenience. It is fundamental to family stability, parental wellbeing and women’s ability to participate equally in the workplace.” This is a big worry for me too. I don’t want to sacrifice my career or my income because of a lack of accessible support for my child. I’m sure there will be moments of absolute joy and delight with my children over the summer – I’m looking forward to spending time with them, slowing down a bit and some trips we have planned. But I would love to have the option to balance this with childcare that really works for my kids, and for me. For parents of disabled children, the bigger question might not just be how we are managing the juggle this summer, but when the system will change to meet the needs of our families. I hope the answer to that comes soon, so that disabled children, and their parents get the support they need and deserve when school’s out for the summer.