A GREAT Sankey family are at the centre of a potentially historic case challenging a law surrounding disabled children's benefit payments.

The ruling, which affects an estimated 500 families a year, means when a child is in hospital for more than 84 days Disability Living Allowance (DLA) payments are stopped as it is viewed the parent's needs will be fully met free of charge by the NHS.

But parents including Warrington dad Craig Mathieson, whose son Cameron spent most of his life in Alder Hey with a rare combination of genetic conditions before his sad death aged five in 2012, has said the reality is very different and mounted a challenge against the Department of Work and Pensions. 

The case is being heard at the Supreme Court in London today, Thursday, with representatives from charities Contact a Family and the Children's Trust campaigning outside for the 84 day rule to be scrapped. 

So far this morning the legal team representing the Mathieson family have argued it actually costs more when a child is in hospital and suggested the impact on children has never been considered when the law was brought in. 

During a day of complex legal arguments, Ian Wise, representing the Mathieson family questioned the basis for the rule to be brought in after 84 days and quoted a Great Ormond Street Hospital report which said parents caring for their children while they were in hospital was a 'modern day reality' of primary care.

A survey from the two charities campaigning for change also highlighted 99 per cent of patients with disabled children provide more or the same level of care when their child goes into hospital than when their child is at home including monitoring their child's condition and 93 per cent reported that when in hospital their day-to-day costs increase including loss of earnings, travel to and from hospital, parking, meals and childcare for siblings.
 

Representatives for the Department of Work and Pensions (DWP) have said a child is being 'maintained, accommodated and provided with medical treatment free of charge by the NHS'.

Tim Buley added it was 'wrong to think DLA was intended to meet all of the person's needs' and was instead a 'contribution' towards caring for a disabled child.

Wearing a dinosaur tie in tribute to his dinosaur-obsessed son, Mr Mathieson said he thought Cameron would be 'proud and happy' the case had got to Supreme Court. 

Speaking before entering the court room, he added: "This can't do us any good now.

"They can't give us back the time with his family he lost but they can give it back to 500 other families a year. 

"Hopefully we can make a difference and bring legislation more in line with the reality families are facing."


The family will now have to wait anything up to 11 months for the Supreme Court's  decision but while many have been shocked their battle has reached the highest court in the country, Mr Mathieson said he expected a long, drawn-out battle. 


He added: "I thought we would have to go all the way due to the level of resistance we encountered and the difficulty of getting anyone to see the other side and just listen to our case.
"I was nervous beforehand about getting the story across in a way people properly understand so nothing is lost in translation.
"It's fantastic to have got this far but now it's time for the judges to make their minds up."

A DWP spokesman added: “Disability Living Allowance (DLA) provides a financial contribution towards severely disabled children’s care or mobility needs.

"Those needs are met in full by the NHS when a child is in hospital so stopping DLA prevents double provision."

Further updates in  next week's Warrington Guardian and to sign a petition in support of the Mathieson family, click here.