Many hundreds of children who have to spend long periods in hospital will remain entitled to disability living allowance (DLA), in spite of what the regulations say, the Supreme Court decided last week. The court’s decision was made, in the face of bitter opposition from the DWP, because of the extraordinary resolve of the parents of Cameron Mathieson, who died at the age of five in 2012.
As the regulations currently stands, children who spend more than 84 days in hospital lose their entitlement to DLA. The DWP argue that this is because the NHS, rather than the family, is now providing attention and supervision for the child, so the family should not get any financial help for those needs.
The reality, as Cameron’s story shows, is very different.
Cystic fibrosis and muscular dystrophy
Cameron Mathieson was born in June 2007. He had to have part of his bowel removed at birth and was subsequently diagnosed with both cystic fibrosis and muscular dystrophy – one of only two children in the UK to have both conditions.
His parents learnt Makaton in order to communicate with Cameron, who had severe developmental delay. They also had to give him physiotherapy twice a day, as well as giving him nebulised antibiotics and a host of other medications and supplements.
Both parents had to give up their business in order to care for Cameron and his three older siblings and, once all their savings were spent, relied on state benefits.
In July 2010 Cameron was admitted to Alder Hey Hospital in Liverpool with chronic bowel obstruction and remained there for the next 13 months.
For every minute of that time, either Cameron’s mother or father was with him at the hospital or in the nearby Ronald McDonald House for parents, spending virtually no time together.
The nurses relied on the parents to feed him by nasogastric tube, administer physiotherapy, give nebulised antibiotics, change his stoma bag up to eight times a day and monitor his condition.
Money became so tight that even affording petrol for the 50 mile round trip to their home became too much and they were unable to bring Cameron’s brothers and sister to visit him at weekends or take Cameron for brief visits to his old nursery school.
In all, the Mathiesons estimated that the additional cost of caring for their child in hospital amounted to £8,000. Yet after 12 weeks, as the law requires, Cameron’s DLA was stopped on the grounds that he no longer needed his parents to provide care for him whilst in hospital. The suspension of Cameron’s DLA amounted to another £7,000 lost, leaving the family borrowing from friends just to pay for necessities.
The Mathiesons appealed against the decision to stop Cameron’s DLA on the grounds that it was a breach of his human rights.
They lost their case at the first-tier tribunal in 2012.
Tragically, Cameron died before the Upper Tribunal hearing in 2013, which they also lost.
Courageously, the Mathiesons decided to fight on so that other families caring for desperately ill children would not have to deal with the same financial pressures that they had been subject to.
In 2014 they also lost their case at the Court of Appeal.
Which is how they ended up before the Supreme Court this year.
The Supreme Court heard evidence from various charities and the Citizens Advice Bureau which suggested that
- 99% of carers provide more, or the same level of, care when their children are in hospital.
- 93% have increased costs relating to their child’s disability when they are staying in hospital.
- Parents are required to attend hospital when their children are in-patients and to take an active part in their medical management - hospital social workers are informed if they fail to do so.
In their defence the DWP quoted the claim of then minister Maria Eagle to the House of Commons, that the role of parents was merely to provide “visits and treats for a disabled child who is adjusting to life in hospital.”
Human rights breached
Last week the Supreme Court found that Cameron’s human rights had been breached and that the first-tier tribunal should have upheld his claim against the DWP.
However, they stopped short of saying the regulations are always in breach of human rights legislation.
What this means is that the Supreme Court accepts that there may be some cases where parents are not providing a similar level of care to a child in hospital that they do when the child is at home and therefore DLA can legally be suspended.
But the Supreme Court was in no doubt that its decision “will no doubt enable many other disabled children to establish an equal entitlement” to continued payment of DLA.
The DWP is currently deciding what to do in light of the decision.
If your child is in hospital and their DLA has been suspended as a result, even though you are providing at least a similar level of care to when they were at home, you should try to get advice from an advice agency to challenge that decision.
If you can’t get advice, and we know finding the time to do so will be almost impossible for many parents in these circumstances, as a first step you can still simply write to the DWP and tell them something along these lines:
Following the decision in Cameron Mathieson v Secretary of State for Work and Pensions  UKSC 47 I believe that my child remains entitled to DLA because we are still providing the same , or a greater, level of care and supervision for my child as we were when they were at home.
I therefore request that you reconsider your decision to suspend payment of DLA to my child following the 84th day of their stay in hospital and to inform me in writing of your new decision in this regard.
You may also want to give a list of all the ways that you continue to provide attention and supervision to your child.
If DLA is not reinstated from the date it was suspended you have the right to challenge the decision via the normal appeal process.