Caring for disabled children

Rhiannon Lucy Cosslett, writing in The Guardian, tells of the loss of Megan, her younger brother’s carer. Her younger brother has autism and epilepsy, and he needs round-the-clock assistance. Megan has split up with her boyfriend and isn’t earning enough to live alone, so she has had to move back to her parents.

I hadn’t realised that the carer’s allowance was £60 per week, £6.19 an hour – far less than a living wage. And that’s OK if you are well-off, like Jacky Ashley and Andrew Marr, but as they say, most people are not in that fortunate position.

I checked with Sheila, who is administrative assistant for Wings, a local special needs support group working with disabled children and young people, providing a range of support from weekend social activities to summer holiday play schemes. She told me that most of their children and young people have personal assistants, paid for from personal care budgets, and that Rhiannon’s story was not atypical.

Perhaps at one level that’s not surprising. One-to-one care work must be hugely draining and I can’t imagine anyone doing it for 40 years – unless of course they have to, as family members.

Jeremy Hunt says that workers who look after elderly parents ought to be able to choose their own hours. That is just a very small sticking plaster over a huge gaping wound.

And going back to Wings, as a charity, Sheila spends a huge amount of time seeking funding from different agencies, all requiring different forms and information, and all with different conditions – and none of whom want to pay core costs. Sheila is paid at above the minimum wage, but not a king’s ransom. On her hours she pays no tax – and it’s a good thing that we can afford for her to do that.

Nationally, we need a sensible debate about care. What happens to disabled young people when they reach 25, for example, and how can families be supported. And it will cost – but that is part of a caring society, and we all ought to contribute.

John Freeman CBE is a former director of children's services and is now a freelance consultant