The summer holidays are upon us and, for me, they bring a sigh of relief. Working freelance means I don’t work in the school holidays. It’s a blissful six weeks when I can relax and just chill out at home with my daughter.
But for many, the school holidays are full of juggling and trying to prevent a complicated work-family balance from collapsing. Frantic late-night phone calls are made to friends begging them to “invite” children to their house the next day. Complicated rotas of who is picking up whom from where at what time are drawn up involving older siblings, grandparents, friends and neighbours.
But if you have a child with a disability, the chances are that your child doesn’t go to the nearest school and you may not have the same kinds of social network on your doorstep that many of us have had the chance to build.
When I was preparing a CD-Rom recently on delivering effective policies for carers for Action for Carers into Employment, a national partnership led by Carers UK, I talked with many parent carers who experience huge problems day-in day-out sorting out child care after school and in the holidays. In their experience, mainstream care simply isn’t flexible enough. School holiday schemes and after-school clubs often can’t take children with additional needs as they don’t have enough staff to be able to provide the care needed and they don’t take children in nappies.
If a parent does manage to get their disabled child into a provider scheme, they may find that it is a different one from the one their other children attend, making it impractical to use. Choice is likely to be limited, if not non-existent, leaving parents sometimes having to take time out of work to take their child several miles to the provider after school.
As a result, the children end up being excluded from joining in with their friends, and the parent carers end up being prevented from participating fully at work or in education and training.
Mary, a mother in London, tells me that leisure opportunities over the six weeks’ holiday for her autistic son would be “a dream for us”. She says: “Something laid on for my child by people who understood his needs is what we need.”
Parent carers also say that emergency cover, where a trained professional carer could step in for a short time at short notice to deal with a train delay, something happening at work, or a sick child, for example, would be a life-saver for them.
John, a lone carer for his daughter, says: “If something happens at work and I really need to stay, I can’t because I have to run to get to the childminder to pick up my daughter. I daren’t be late picking her up I can’t risk losing her. It took me months to find someone who could look after her after school two days a week so I could work. There’s no one else locally who I can have as an emergency contact. Nobody else can cope with her.”
The £340m funding package for families with disabled children living in England announced recently may provide an opportunity for parents to state what they need, and get what they need. Let’s hope they ask parent carers to help design the schemes so that finally they and their children have the opportunities they deserve.
Sally Anfilogoff is an independent consultant and trainer in the public sector
Care to Take a Look: Delivering Effective Policies for Carers
This article appeared in the 9 August issue under the headline “Down side of summer holidays”
Are you having difficulty sorting out child care for the summer holiday or can’t find summer holiday play schemes in your area? Let us know, email Clare Jerrom