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Legal win for disabled boy's family

A family whose severely disabled son's Disability Living Allowance state benefit was taken away while he was in hospital have won a landmark battle against the Government at the UK's highest court.

The father of cystic fibrosis and Duchenne muscular dystrophy sufferer Cameron Mathieson - who died aged five in 2012 - went to the Supreme Court to challenge a regulation that suspends the Disability Living Allowance (DLA) after a child's first 84 days in hospital.

At the heart of the case was a 2010 decision by the Work and Pensions Secretary to suspend Cameron's DLA on grounds that he had been an inpatient at Alder Hey Hospital in Liverpool for more than 84 days.

Five justices in London unanimously allowed an appeal by dad Craig Mathieson, of Warrington, Cheshire, who carried on the legal battle after his son's death against the "grossly unfair" rule.

The Supreme Court announced it was setting aside the Secretary of State's decision and "substitutes the decision that Cameron Mathieson was entitled to continued payment of DLA with effect from October 6 2010".

Cameron was born on June 19 2007 and died on October 12 2012.

He was diagnosed with cystic fibrosis and muscular dystrophy soon after he was born.

Supreme Court judges said his parents went to great lengths to meet his exceptional and complex needs during his short life.

On July 4 2010, Cameron was admitted to Alder Hey for symptoms of chronic bowel obstruction, and remained there as an inpatient until August 4 2011.

During his stay, one or other of his parents was present in the hospital at all times and remained his primary caregivers, the Supreme Court said.

DLA regulations provide that a child under 16 will cease to receive the state benefit after the 84th day of his or her admission as an inpatient in an NHS hospital.

On November 3 2010, the Secretary of State decided that Cameron's DLA should be suspended effective from October 6 that year.

The family continued to receive other benefits, but the suspension of DLA from October 2010 to August 2011 amounted to a loss of about £7,000.

The justices said that although Mr Mathieson invited the court to "disapply" the provisions for the suspension of DLA in the case of children, they declined to do so, "leaving it to the Secretary of State to decide what measures should be taken to avoid the violation of the rights of disabled children such as Cameron following their 84th day in hospital".

Children's charities described the ruling as an "incredible victory" for the "ordinary family of a disabled child who took on the Government and won".

They said the decision will have a "significant impact" on the estimated 500 families with severely disabled children who spend time in hospital undergoing treatment.

Contact a Family and The Children's Trust said they are now calling for the Government to urgently act on the court's ruling - to "issue guidance to ensure that similar unlawful decisions are not made and scrap the rule that says that DLA should be suspended when a child has been in hospital for more than 84 days once and for all".

In a joint statement, Amanda Batten, chief executive officer of Contact a Family and Dalton Leong, chief executive officer of The Children's Trust, said: "Today's Supreme Court judgment is an absolutely incredible and a groundbreaking victory for the Mathieson family, who have fought tirelessly on behalf of some of the most severely disabled children in the UK who require hospital treatment.

"We are delighted that the Supreme Court has recognised that it is unfair and unlawful to remove the main disability benefit for children - Disability Living Allowance (DLA) - from families of the most sick and disabled children when they need it most.

"The judgment shows that the court understands that many parents provide extra care that even the best equipped hospitals can't give and have substantial costs - such as loss of earnings, travel and meal expenses, parking fees and childcare costs for siblings - as a result.

"This is great news for families of disabled children across the UK. The welfare system should be there to protect families when they are at their most vulnerable.

"We now call on the Government to urgently act on today's judgment and scrap this unfair rule once and for all. Families affected by the rule should seek advice about using this judgment to ask that their DLA payments restart."

"We would like to extend our gratitude and heartfelt thanks to the Mathieson family who have fought tirelessly, not for their own benefit, but for the other hundreds of families affected each year."

Craig Mathieson said in a statement: "This decision is a fantastic legacy for Cameron.

"Cameron adored people and he would have been delighted to know that because of him other vulnerable children and their families will not have to endure the same financial hardships that we had to contend with while he was in hospital."

His lawyer, Mitchell Woolf, of Scott-Moncrieff Solicitors, said: "The Supreme Court has today found that by suspending Cameron's DLA payments after 84 days in hospital the Secretary of State for Work and Pensions violated his human rights.

"While this judgment does not immediately apply to all similar cases, it enables around 500 families to seek the reinstatement of their DLA payments, so they will be able to afford to visit and care for their sick children having long-stay hospital treatment.

"It could also benefit very many more families into the future."

He said Mr Mathieson chose to fight for other families after he lost his own son so they would not go through the "significant" hardships his family had faced when the DLA was stopped.

Mr Woolf added: " In Cameron's case, as with other equally ill children, his parents were being relied on by the hospital to assist with his daily care and his father or mother was resident in the hospital at all times.

"The DLA enabled the Mathieson family to fund this arrangement.

"Stopping the DLA leaves other families unable to afford to visit and support their children, sometimes as they suffer a terminal illness.

"The Supreme Court has today ruled that stopping DLA payments to a very sick child once their treatment in hospital continues for more than 84 days contravenes the Human Rights Act and the law's obligation to treat the child's best interests as a primary consideration in accordance with the UN Convention on the Rights of the Child and the UN Convention on the Rights of Persons with Disabilities.

"This judgment means families can afford to visit their sick children and care for them in hospital."

A DWP spokesman said: " The Government recognises the difficult situation faced by parents and families where a severely disabled child requires a long stay in hospital for treatment.

"Disability Living Allowance provides a financial contribution towards a severely disabled child's care or mobility needs.

"Up to now DLA has been suspended when a child is in receipt of long-term NHS in-patient care in order to prevent double provision - the taxpayer paying twice for the same thing.

"This has been the case for more than 20 years. We are considering the judgment carefully."


From Belfast Telegraph