Disabled children are being denied financial help when they need it most according to a mum who is among those calling for the rules to be changed.
Joanne Lancaster, of Stanley, is backing a campaign by charities to change a ‘flawed’ government rule that suspends Disability Living Allowance (DLA) if a child spends 84 or more days in hospital.
The government argues that DLA payments are suspended because their needs are fully met in hospital free of charge.
But Contact a Family and The Children’s Trust say 99 per cent of parents provide more or the same level of care when their child is in hospital, and 93 per cent incur increased costs.
Mrs Lancaster’s son Toby, 6, has Down Syndrome and a complex heart defect. She said: “When he’s in hospital I take care of all his personal needs. I am there with my child 24/7.
“At home you get breaks and because you know they are in a safe environment, you can nip to the toilet or make a cup of tea.”
She said petrol and parking costs add up when he is in hospital too, as well as childcare for siblings and money for hospital food.
Dalton Leong, chief executive of The Children’s Trust, said: “Suspending DLA also leads to the parents losing their Carer’s Allowance and other benefits, which can prove financially devastating. We urge the government to stand by its commitment to protect vulnerable people in society by abolishing this rule at the earliest opportunity while it is reforming the benefits system for under-16s.”
A spokesman for the department for work and pensions, said: “Our sympathies are with these families during this very difficult time.
“DLA is paid to help people who are unable to walk or virtually unable to walk or do things like wash and dress themselves.
“After a child is looked after free of charge in hospital for nearly three months we put payment of their DLA on hold because their needs are already being met by the NHS.”