Call for action at Supreme Court: Stop the DLA Takeaway
Our 'Stop the DLA Takeaway' was heard at Supreme Court this Thursday (26 March). The Campaign with Contact a Family is calling for the Government to abolish the Disability Living Allowance (DLA) regulation that suspends vital benefits for disabled children in hospital. During the hearing the results of our survey providing evidence that the rules are unfair were read out. A judgement is expected in the near future. Cameron Mathieson from Warrington had very complex medical needs and passed away in October 2012 at the age of five, having spent more than half his life in Alder Hey Hospital. During this time Cameron fell foul of the rule, whereby DLA payments are suspended for under-16s when they spend more than 84 days in hospital. Sign our petition to show your support for the Mathieson's this Thursday and to keep up to date with all of Contact a Family's campaigning work. This caused his family immense financial hardship as they balanced their caring responsibilities for Cameron with keeping normal family life going for their other three children, whilst dealing with the ongoing costs of visiting a loved one in hospital day after day. The Mathiesons say they are mounting their legal challenge in Cameron's name so that no other family with a disabled child who spends long periods in hospital will have essential financial support taken away from them. An estimated 500 families are affected by the rule each year. The Children's Trust is running the Stop the DLA Takeaway campaign jointlywith the charity Contact a Family. Together we have given the family our support and wrote to the Supreme Court urging them to hear the appeal. Our research has shown the negative impact that the 84-day rule can have on families of very sick or disabled children. Welcoming the Supreme Court decision, Dalton Leong, Chief Executive of TheCameron1 Children's Trust, said: "Current DLA regulations mean that some of the UK's most severely disabled and sick children are being denied financial assistance at a time when they need it most. "We have been campaigning to get the 84-day rule abolished and hope the Mathieson family's brave decision to continue fighting their case will make this happen." Amanda Batten, Chief Executive of Contact a Family, said: "We wish the Mathieson family luck in their appeal, which if successful could help hundreds of disadvantaged families with disabled children who are affected by the DLA takeaway each year." Craig Mathieson, Cameron's father, said: "When a child is so ill that they need hospital care, they and their families need support, not penalties. Yet the system only causes more distress and hardship. "While Cameron was in hospital my wife and I remained his primary caregivers, and one of us stayed by his bedside at every waking moment, caring for him, nursing him, giving him medicines, keeping him happy and bringing his brothers and sister to see him and play with him. We provided far more than the nurses on such a busy ward could have done in their hourly checks." The Children's Trust and Contact a Family's joint research carried out with over 100 affected families found that:
- 99 per cent provide more or the same level of care when their child goes into hospital compared to when their child is at home. This can include carrying out their child's care alongside medical staff, monitoring their child's condition and assisting with communication between their child and hospital staff
- 93 per cent reported that when in hospital their day-to-day costs increase. This can include loss of earnings, travel to and from hospital, parking, meals and childcare for siblings.
- The Mathieson family's legal challenge has been ongoing since November 2010, when their son Cameron was still alive. The case then went to the First Tier Tribunal in December 2011, the Upper Tier Tribunal in January 2013 and the Court of Appeal in February 2014. The case is expected to come to the Supreme Court within the next nine to 15 months.
- A child under the age of 16 who is eligible for DLA stops receiving payments once they have spent 84 days (which may be linked rather than consecutive) in hospital or another medical setting. A change to this rule would require changes to regulations 8, 10(2), 12A and 12B(1)(b) of the Social Security (Disability Living Allowance) Regulations 1991.
- The Children's Trust and Contact a Family's joint report on their survey of families affected by this issue can be downloaded here.
- Families who completed the survey described their caring duties while in hospital as including personal care such as feeding, changing nappies and pads, bathing, dressing and taking their child to the toilet, as well as turning their child every few hours because they are unable to change position in bed because of their disabilities. In addition, parents were there to communicate for their child with hospital staff and provide education and stimulation. In some cases parents are providing medical care such as administering feeds and medications, changing nasogastric tubes, physiotherapy and monitoring oxygen levels. Often they stay with their child 24/7 and sleep by their hospital bedside.
- Families who completed the survey also described the substantial extra costs associated with their child's disability that they incur when in hospital. This included transport and car parking costs, buying food from expensive hospital canteens as there are no kitchen facilities for parents, phone costs and costs of toys, internet access and other entertainment to keep children occupied on hospital wards. In addition families also experience loss of earnings and childcare costs for other children.
- The 99% of parents who told us the level of care they give remains the same or increases when their child is in hospital is broken down as follows: 68% said they provide more care than they do when their child is at home and 31% said they provide the same level of care as when their child is at home.
- The estimate of 500 cases of children affected by these rules each year in the UK was calculated using figures from the Department of Work and Pensions. We looked at the number of children aged 0-15 who were entitled to DLA and those that were in payment over a period of three years. The difference between the two figures is the number of children who have been hospitalised and so lose both the care and mobility components. An average of 285 were affected at any time in the quarterly snapshot. We have estimated that there will be a proportion of new cases and a proportion of recurring cases within a year, so estimate the number of families affected to be between 400 and 500.
- Contact a Family and The Children's Trust calculate the cost to the Government to amend the regulations to be between £2.7 million and £3.4 million. To calculate this we used the highest possible DLA payment figure – high rate care and high rate mobility of £131.50 per week. It is unlikely that all children will be on the highest rate, but this gives us a maximum cost to Government: £131.50 x 52 weeks 400 or 500 gives total cost as £2.7 million to £3.4 million.
- The 84 days currently stipulated by the government do not have to be consecutive and, unless separated by 28 days at home, the hospital stays will be added together.
- A related rule that Contact a Family and The Children's Trust are also campaigning against states that a child under the age of 16 who first becomes eligible for DLA whilst in hospital or another medical setting cannot start receiving payments until they have been discharged home. A change to this rule would require changes to regulations 10(3) and 12B(2) of the 1991 Regulations.