With the summer holidays here, most families will need to find a way to entertain their children throughout the six-week break, particularly if they are working or need respite.
Holiday clubs and babysitters are the go-to for many, but for parents of disabled children, a new poll by disability charity Contact has revealed nine out of 10 are unable to access these essential services throughout the summer.
Jasmin Manley, 24, from Cheshire, has a five-year-old son, Max, who has an undiagnosed genetic disorder and complex needs. But even clubs that claim to be disabled-friendly have turned them away.
‘I have contacted every single provider who offers SEN holiday clubs and they all either require a parent to stay or they don’t offer personal care such as nappy changes,’ she tells Metro.co.uk.
‘The thought of the summer holidays fills me with dread because it’s just so hard to juggle everything. This then makes me feel ashamed as a parent.
‘It’s not that I don’t enjoy caring for my son, he is my world and I adore spending time with him. I just can’t keep up with the high level of care he needs and try to work at the same time.
‘I wish there was a service that provided even the smallest bit of childcare for those with complex needs.’
Jasmine, who frequently blogs about being a SEND parent, receives Direct Payments, which can be used to hire a personal assistant to help with caring. However, she’s been told Max only qualifies during term time, not school holidays, because he doesn’t have an assigned social worker, meaning the parents can’t hire help to send him to a club.
With the holidays looming, instead Jasmin and her husband must entertain Max at home, while both trying to work, often throughout the night.
While Jasmin has made a sensory room in her home, it means that Max will still be staying indoors a lot of the holiday.
She adds: ‘It just doesn’t seem fair that Max won’t get the chance to have fun with children his own age.’
More than a quarter (27%) of families from Contact’s survey said they would be tag-teaming with their partner or extended family in the summer holidays, but for children with high-care needs, family and friends simply can’t step in.
‘Being in a school environment has given Max the skills to cope with being around other children. But before he started school, he couldn’t be in the same room as a child without headbutting the floor and self-harming,’ Jasmine says.
‘Eighteen months later, he is now able to cope with a classroom of 10 children without any distress and will sometimes initiate interaction and play with them.
‘To have six weeks where he can’t get the same socialisation means he loses skills he’s worked so hard to gain. He starts to become more scared of children again and then really struggles to adjust when he starts back at school in September.
‘I feel the Local Authority should provide funding for specialist schools so that they can have a holiday club for the children. As a parent to know your child is going to suffer but be unable to do anything is soul destroying.’
Mum Lauren McAllister, 34, from Northampton, has also been unable to secure a holiday club for her seven-year-old daughter, Ava, who has a learning disability and is nonverbal.
It means that Lauren will be doing most of the childcare throughout the six-week break.
‘Both myself and my husband work full time and we have been told Ava cannot access disabled-based clubs because she has intimate care needs (nappy changing), so the care predominantly falls on us,’ Lauren says.
‘We do have a social care budget, but the hours are small (just six per week) and there is a huge shortage of care workers meaning we are struggling to hire anyone.
‘We have a support worker, but they can’t commit to the hours we need during the holidays. Ava also struggles with her behaviour at times and so childcare is a real challenge.’
Lauren is currently on maternity leave with her five-month-old baby but says the holidays are still proving daunting.
‘Holiday clubs are generally marketed towards children more broadly as opposed to disabled children. It’s generally assumed that all children are the same, and the staff-to-child ratio reflects that,’ she shares.
‘Currently, the government offers HAF vouchers [holiday activities and food] for vulnerable families, which includes disabled children. However, when you go to book these activities most of them are not even bookable for disabled children.’
With holiday clubs not an option, Lauren instead is exploring getting a support worker who can accompany her and Ava out for a few hours a week during the holidays.
‘The hardest part about being a carer, and no doubt to a degree being disabled, is that you have to constantly battle and justify the reasons why you need something. It shouldn’t be like that,’ she says.
‘School holidays are really overwhelming and it makes me sad and angry because my daughter is entitled to play. She is entitled to be herself, she is still a child- she’s just a child that has different needs.’
The Contact survey, which ran from June to July 2023, showed that 81% of families with disabled children would like a holiday club.
Four in 10 (40%) said this was to enable them to work and 77% wanted their child to socialise with other children.
Yet just 10% have found something suitable and 4% of everyone surveyed said they’d found something for the days and hours they need.
Anna Bird, chair of the Disabled Children’s Pprtnership and chief executive of Contact, said: ‘The lack of available and suitable holiday clubs for disabled children this summer is piling increased pressure on families. Many parents say they are dreading the holidays and feel a sense of despair.’
‘In addition, the consequences for disabled children including isolation, lack of social contact and routine, will make the return to school much harder.’
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