Day one of the school holidays this year set the tone for the sprawling six weeks ahead. My teenage son rolled out of bed at a leisurely 1.05 p.m., by which time my daughter had smashed her head repeatedly against the kitchen wall, bitten my leg and trashed our living room. And so began a typical ‘summer break’ for a family with a disabled child.
The gap between holiday provision for children with, and without, special needs and disabilities (SEND) during summers has long played out under my roof because I have one of each. Before my non-disabled son reached an age when he could sleep in all morning, I would enrol him in play schemes and clubs or lean on loving grandparents to entertain him while his dad and I worked; the typical summer juggle of so many parents.
For my daughter, however, it has been a more frustrating story. She has a physically disabling genetic disorder and learning disabilities. She is older than her brother but can’t feed or clothe herself and her behaviour becomes aggressive when she can’t make herself understood. She needs one-to-one care throughout her waking hours. In term time, when the system works, she receives that at school but in summer, it’s just us.
Like so many families of disabled children, we face summer with horror. Grandparents can’t be expected to lift her in and out of her wheelchair. Accessible play schemes are rare. Because I work, funding for support in our home means paying £30 an hour for skilled agency staff or months of negotiation with the cash-strapped local authority to help fund her care.
We are not alone. There are 1.1 million disabled children in the UK and the majority of families struggle to find or fund care in the holidays, causing some to quit their jobs. A survey by the Disabled Children’s Partnership (DCP), an umbrella organisation of 100 children’s charities, found that 53 per cent of parents had given up work to care for their disabled child.
Elaine Bennett, from the member charity Contact, tells me that they get weekly calls from parents struggling to find care that meets their children’s needs and is affordable. ‘Many families with disabled children report that childcare and holiday clubs can be unsuitable and availability limited,’ she says. The charity Mencap found that 80 per cent of parents who have children with a learning disability struggle to access support services at all during the summer holidays.
Sally Gallagher, 52, is one such example. The single mum and part-time bookkeeper from Dorset, has a 12-year-old daughter who needs full-time supervision after suffering a brain injury. ‘I face every summer with absolute dread,’ she tells me. ‘It’s a yawning gap with no local provision. I scrabble between what I have to do to feed the family and make sure my daughter is supervised. I gave up full-time work long ago because of the endless fight for her care.’
The cost-of-living crisis has made the annual search for a solution even harder. It’s more expensive to raise a child with disabilities and families are more likely to be on lower incomes because often, like Sally, they have already had to reduce their hours or take less senior positions to manage after-school care and the frequent hospital appointments. The charity Scope found that disabled people and their families face extra costs of around £583 a month, made up of specialist equipment, therapies and other bills. At a time when energy prices are spiralling out of control, food shops have become more expensive and the cost of filling up the car grows ever higher, families with disabled kids are being forced to make really difficult choices, summer childcare among them.
My daughter needs one-to-one care. In term time she receives that at school but in summer it’s just us
Indeed, more than a quarter (28 per cent) of parents with a disabled child, who are unable to access adequate or affordable provision, say that this year they will have to cut back on essentials like food, heat, or clothing as a result of the cost-of-living crisis, according to a report by the Coram Family and Childcare Trust.
Friends outside our world are often surprised that there is little state support for our kids. Disabled children have an Education, Health and Care Plan (EHCP), a document that charts their needs, targets and the provision and funding required to meet those targets. If the system works well, the summer break should be covered under the ‘care’ section of an EHCP, possibly in the form of a ‘short break’ – a stay at a residential centre, or a day out with a carer.
However the assessment of need for the ‘care’ part is made by financially stricken local authorities, which also provide the funding. This conflict of interest against the background of a £573 million funding gap for children’s social care, means young disabled people often receive minimum support. Parents frequently secure respite only if they roll up their sleeves to go into battle with their council but even then the service isn’t always available.
Short-breaks provision has been another victim of the pandemic. Today, there is some support from the government in the form of benefits. If you work and claim Universal Credit, you might be able to claim back up to 85 per cent of your childcare costs from the DWP. But you have to pay up front and there are limits on how much you can claim. A similar system operates for parents on Working Tax Credit.
The government’s flagship Tax-Free Childcare scheme gives families up to £1,000 per disabled child under the age of 11, every three months towards holiday clubs and childminders. But the uptake for this is low, possibly because there are few places to spend that money. As Sally Gallagher explains: ‘I can’t use the childcare element of Working Tax Credit because you have to pay Ofsted registered childminders and Tax-Free Childcare has to be used for approved organisations. We live in the countryside and those just don’t exist for young people with special needs.’ Instead, she relies on paying neighbours to be assistants for her daughter.
The Coram Family and Childcare report also found that only 7 per cent of local authorities have enough holiday childcare for disabled children, plunging from 16 per cent last year. More than two-thirds of parents with a disabled child say there is no adequate summer childcare in their area. And just 11 per cent say that there is adequate provision that they can afford.
Councils argue that they don’t have the cash to cover the costs but there is another factor at play. The exodus of staff from the social care sector – 40,000 people in the second half of last year – means that even with funding, many specialist holiday clubs don’t have the skilled employees necessary to manage the needs of disabled children.
The impact of Brexit on a sector that relied heavily on European workers has been compounded by remaining staff finding more lucrative work in areas like hospitality where wages have risen sharply. In the past I had relied on a local SEND holiday club for my daughter that always ran in the first two weeks of summer. This year it was suddenly pushed back two weeks because of staff shortages. Tearful parents were given a week’s notice despite families having built their summer around that one bit of respite.
Reform of the SEND system will be in the in tray of the next prime minister. In its SEND Review published in March, the government recognised that the system meant to support our children doesn’t work. It’s too adversarial for parents and leaves children with poorer out-comes than their age-group peers. A SEND Green Paper includes just one line about respite. Councils will be able to bid from a £30 million pot over three years. By then my daughter will have left education. For far too long the government has shied away from properly supporting families of SEND children. With a new government taking charge, it’s about time our voices were finally heard.
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