From next month, parents of children admitted to hospital for long periods will no longer have to struggle with the loss of their disability living allowance (DLA) as well as dealing with their illness. The change in the law is due the extraordinary resolve of the parents of Cameron Mathieson, who died at the age of five in 2012.
At present, children who spend more than 28 days in hospital lose their entitlement to DLA. The DWP had argued 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 is, of course, very different, with families being expected to provide huge amounts of support.
In Cameron’s case, 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.
The Cameron’s argued that the removal of their son’s DLA was a breach of his human rights and took their case all the way to the supreme court, fighting on even after Cameron’s death for the sake of other parents in the same position.
The supreme court upheld their claim in July 2015, but were not prepared to say that the regulations would be unlawful in every single case.
Now, however, the DWP have bowed to the inevitable and changed the law so that children admitted to hospital before their eighteenth birthday will continue to be eligible for DLA and will also not be obliged to make a claim for PIP instead whilst they remain in hospital.