A month story that does the reality of claiming benefits for some families: James Coney ‘confessed’ to claiming benefits last week. The response has been overwhelming
t was the message from Gavin MacKinnon that finally made me cry. His daughter, Ella, 8, has Down’s syndrome, which means he is a middle-class benefit claimant, just like me. He had dropped me a line via Twitter on Sunday morning after reading a piece I had written about my ten-year-old son Charlie, who is learning disabled. I had described how I was terrified about the prospect of more Tory cuts to benefits.
A chartered surveyor who has an eight-year-old autistic son emailed: “I’m a middle-class parent — higher-rate taxpayer too. The system is a nightmare for people who are not used to business or tax administration. But we desperately need the respite it brings.” Charlie has what is called “global developmental delay”. That’s what doctors call it when you are learning disabled but they cannot diagnose a cause.
We’re grateful for every drop of it — from his wonderful specialist school, Perseid, in southwest London, to the taxi that Surrey county council provides to take him there. It’s an hour’s trip. The help is vital, but it’s not enough. Sir Iain Duncan Smith introduced direct payments for carers when he was work and pensions secretary. The idea was that people could take responsibility for their own needsWe found one run by a brilliant charity called Challengers that was an hour’s drive away, but was hugely oversubscribed. Some people mark the date on their calendar that Glastonbury tickets are released. We mark the day Challengers booking starts.
There was supposed to be a choice. There is not. Finding someone willing to care for a disabled child for about £11 an hour — roughly the same as you’d pay a teenage babysitter to watch Netflix while your children are asleep — is almost impossible. At least two thirds of the people who come for an interview decide they don’t want to do it once they see what it involves.
On one occasion, the taxi to school failed to turn up. The council had cancelled its contract without telling us. We emailed to find out what was going on and received an automated reply saying they would get back to use within 15 days. There was no phone number. A year later, her new boss asked her to do a couple more hours a week and offered a small pay rise. Sarah was keen, but found out she would be disqualified from claiming any of the carer’s allowance, even though the number of hours’ care she was doing was the same. A pay rise would have left us worse off.
We got a black labrador called Huxley because Charlie loves dogs and hoped it would provide him with some entertainment and companionship. Charlie will hug him in a headlock and pull his ears. Huxley never bats an eyelid. On walks they hang at the back, behind us, looking out for each other. And he can hurt us sometimes too, with a misplaced scratch, kick or swipe of a hand. You find a way to laugh them off at work. Sometimes he can hurt himself, only he can’t tell you how or where.
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