The family of Cameron Mathieson, who suffered from cystic fibrosis and Duchenne muscular dystrophy, has won it’s legal bid to challenge limits on welfare payments to severely disabled children in hospital. Cameron was diagnosed with cystic fibrosis and muscular dystrophy soon after he was born in 2007 and sadly died in October 2012. In 2010 the Work and Pensions Secretary decided to suspend Cameron’s Disability Living Allowance (DLA) on grounds that he had been an inpatient at Alder Hey Hospital in Liverpool for more than 84 days.
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 around £7,000.
Supreme Court judges agreed that the Department for Work and Pensions (DWP) had been “grossly unfair” when it stopped Cameron’s payments after 84 days. A panel of three judges concluded that the decision was a violation of Cameron’s human rights and that the Secretary of State had “acted unlawfully in making the decision.”
Cameron’s family said they had continued the fight over DLA payments on behalf of other families. Speaking after the ruling, Cameron’s father Craig said: “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 we had to contend with while he was in hospital.”
Supreme Court judges said his parents went to great lengths to meet his exceptional and complex needs during his short life. During his stay, one or other of his parents was present in the hospital at all times and remained his primary caregivers.
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.
“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.
“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.”
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.
“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.”
The spokesman added: “We are considering the judgment carefully.”