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Sophie's battle: Finding specialist care for summer holidays
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‘Disabled children in Kingston can access funding through the EYDCP for one-to-one support for three mainstream afterschool clubs per week, but not, automatically, for holiday clubs.’
‘Are the parents of severely disabled children only supposed to work three days a week, term-time only?’
In 1998, Sophie pursued a Child in Need assessment as a result of which she received funding for a support worker to be with Rachel in mainstream holiday clubs for two days a week in each school break.
‘But that’s an individual achievement’, she says. ‘Each parent would have to do that individually and I don’t think that’s right. Many parents are too worn out for that.’
'In any case,' she adds, 'in the holiday periods twice-a-week care doesn’t put Rachel on an equal childcare footing with her able bodied peers.’
Specialist provision is also tight. ‘All of what is available in London appears to be based on the assumption that mothers of disabled children do not work. I have never met a parent with a severely disabled child who could get five after-school clubs per week for their child - in Kingston parents can only book a maximum of three per week. And until this summer, specialist holiday clubs in Kingston were available from, say, 10am-3pm, 2 days a week and for 4 weeks in the summer rather than 8.30-6pm, 5 days a week and for 6 weeks in the summer, as for able bodied children.
‘I have traipsed round everywhere. I telephoned 60 childminders one summer. Only two considered having Rachel and in the end neither could have her. One childminder said she would do a ‘trial’ for one month and then let me know if she would continue. Another asked me: ‘how retarded is she?’ I cannot begin to explain what it feels like to be trying to “sell” your daughter over the phone. I could never do it again.’
Sophie manages to work full time because she has given up her nursing job for a voluntary sector post in which she can do flexible hours: Rachel is at a specialist school and attends a specialist after-school club three times a week.
This summer, thanks to Sophie’s unstinting campaign, Kingston’s full-time pilot specialist holiday club ran from 8.30–6pm, 5 days a week for 3 weeks of the school break. Rachel thoroughly enjoyed her time there. ‘She was socialising and having fun. It benefited both of us. I was determined to stay on the EYDCP until I saw something happen.’
For more information see www.oneparentfamilies.org.uk/disabledchild
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