Earlier this year the Supreme Court heard an appeal regarding the case of Cameron Mathieson, a child who was born with Duschennes Cystic Fibrosis and had other complications which meant that from infancy his parents received the highest components of the Disability Living Allowance (DLA).
Cameron was admitted to hospital and prior to being admitted his parents were informed that his DLA “would be reviewed” and only after a set period was the DLA stopped.
The facts of the case are summarised briefly in the court papers thus:
“Regulations 8 and 10 of the Social Security (Disability Living Allowance) Regulations 1991 operate to suspend automatically the payment of Disability Living Allowance (DLA) to a child who has been in hospital for more than 84 days. The appellant was diagnosed with a number of severe medical conditions in early infancy and his complex bodily needs were met by his parents, who received the DLA at the highest level. After the appellant had spent over 84 days in hospital in 2010 the respondent ceased to pay the DLA, until he was discharged in August 2011, although his parents continued to visit and care for him in hospital. He died on 12 October 2012. His claim that his rights under arts. 8 and 14 ECHR were breached by the withdrawal of DLA when he was in hospital was continued by his father after his death.
ECHR is the European Convention on Human Rights .
ECHR ARTICLE 8: “Right to respect for private and family life 1. Everyone has the right to respect for his private and family life, his home and his correspondence. 2. There shall be no interference by a public authority with the exercise of this right except such as is in accordance with the law and is necessary in a democratic society in the interests of national security, public safety or the economic wellbeing of the country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others.”
Article 14 ECHR : “Prohibition of discrimination The enjoyment of the rights and freedoms set forth in this Convention shall be secured without discrimination on any ground such as sex, race, colour, language, religion, political or other opinion, national or social origin, association with a national minority, property, birth or other status.”
What became clear when listening to the child’s father being interviewed by the Breakfast Team at the BBC, on the day of the appeal being heard; was that the hospital had made it clear that someone should always be with Cameron. Otherwise they would see this as something to report to the ‘appropriate authorities’.
In essence therefore the expense for the family was increased, because of travel, and other expense incurred in caring. It could even be argued, I suppose, that by having someone in attendance all the time, was an extension of home care by the parents anyway, though the allowance was allocated to Cameron Mathieson. .
The short life of Cameron Mathieson was put very succinctly and poignantly by his father.
“Cameron lived life at full pelt. Although he was our son, 600 people attended his funeral, so he was their child as well.”
On 8 July 2015 the Supreme Court made a ruling in favour of Cameron Mathieson . The facts of the case and Judgement in its entirety can be found here.
Kathleen Hawkins, the BBC’s Disability reporter at Ouch Blog, writes
“This decision will be celebrated by many disability campaigners, who have argued for a long time that disability benefits should continue while a person is in hospital.
They say that a disability does not simply stop when a person enters hospital, and the costs incurred by family members are often much higher during this time.
They also argue that for children the need for a continuing allowance during a hospital stay is crucial. Severely disabled children often have specific, individual needs that only parents may understand, and articulating these needs to hospital staff can be an important part of the care they receive.
Up until now, DLA has been payable to under-16s for the first 84 days of a hospital stay. It has two components – care and mobility – and in this case Cameron’s parents say they continued to act as full-time carers to their son.
It was estimated by children’s charities in 2013 that there were around 500 children affected by this rule every year, so this decision could signal a change in how funding is handled for these families too”.