A GREAT Sankey family has had their legal challenge over the removal of Disability Living Allowance (DLA), after their disabled son spent more than 84 days in hospital, heard at the Court of Appeal.
As previously reported in the Warrington Guardian, Cameron Mathieson died aged five in October 2012 having spent more than half of his life in Alder Hey hospital.
His family are challenging the DLA ‘84-day rule’, whereby payments are suspended for under-16s when they spend more than 84 days in hospital.
Parents Craig and Lynette said they are mounting the challenge in their son’s name so that no other family with a disabled child who spends long periods in hospital will have essential financial support taken away from them.
An estimated 500 families are affected by the rule each year.
Craig added: “We are determined to overturn this grossly unfair rule in Cameron’s name to stop more families having to go through what we have had to endure.
“When a child is so ill that they need hospital care, they and their families need support, not penalties, yet the system only causes more distress and hardship.
“After 84 days Cameron’s DLA was suspended, along with Carer’s Allowance and our National Insurance contributions, heaping unbearable financial and emotional pressure on us as a family.”
‘Bubbly’ tot Cameron was the only patient in the world with both cystic fibrosis and Duchenne’s muscular dystrophy in the genetic combination he had.
National charities Contact a Family and The Children’s Trust have given the family their support as the Government argues the suspension of payments is justified because the patient’s needs will be ‘fully met’ free of charge by the NHS.
However a recent charity found the Government’s rationale is flawed.
Paul Soames, chief executive of Contact a Family, said: “The DLA rule was introduced just over 20 years ago and now children with such complex needs have a much greater chance of survival.
“Most of the children this rule affects are severely disabled and need round the clock care that even the most well-equipped hospital cannot provide.
“Clearly parents do not leave their children at the door of the hospital and go home to carry on with life as normal.
“In reality, most are providing the same or more care and their costs increase.”
The family will now have to wait several weeks for the Court of Appeal’s verdict.