Warrington family battles government on disability benefit
A family whose disabled son's benefit was taken away while he was in hospital, have challenged the government rule.
Cameron Mathieson spent more than two years in Alder Hey Hospital with cystic fibrosis and muscular dystrophy.
His family argue they acted as full-time carers until the five-year-old's death, in October 2012.
Government guidelines state Disability Living Allowance (DLA) is not payable after the first 84 days in hospital.
Cameron's father Craig, said they were challenging "this grossly unfair rule in Cameron's name" and plan to take the government to the Court of Appeal.
He said: "Cameron had a unique combination of conditions and was the only such patient in the world with both cystic fibrosis and Duchenne's muscular dystrophy in the genetic combination he had.
"While he was in hospital, my wife and I remained his primary caregivers and one of us stayed by his bedside at every waking moment, caring for him, nursing him, keeping him happy, bringing his brothers and sister to see him and play with him, giving medicines - far more than the hourly checks that he would have received on such a busy ward.
"Abdicating Cameron's care to hospital staff during this time was simply not an option because they had made it clear to us how much they depended upon our input, yet after 84 days his DLA was suspended, along with Carer's Allowance and our National Insurance contributions, putting unbearable financial and emotional pressure on us as a family."
Children's charities Contact a Family and Children's Trust are backing the Mathieson's challenge and have written to Esther McVey, Minister for Disabled People, about the issue.
They have estimated there are up to 500 cases of children affected by this rule each year in the UK, with parents often staying with their child around the clock.
'Hospital meets need'
Dalton Leong, chief executive of The Children's Trust, said: "Current DLA regulations mean that some of the UK's most severely disabled and sick children are being denied financial assistance at a time when they need it most.
"Removing DLA from a child, leads to the parents losing their Carer's Allowance and in some cases other benefits. This can prove financially devastating for families with severely disabled children who are often in and out of hospital.
"We urge the Government to stand by its commitment to protect the most disabled, by abolishing this rule."
A Department for Work and Pensions spokesman said: "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.
"Children receive DLA payments for longer [than over 16s] after being admitted to hospital, because we recognise they need longer to adjust."