Stop the DLA Takeaway campaign
We are working with Contact a Family to call for important changes in the Disability Living Allowance (DLA) regulations that will help support hundreds of families with disabled children in crisis every year. The so-called "84-day rule" means that a child's DLA payments are suspended after they spend longer than 84 days in hospital, which places families in financial hardship at an already distressing time. Our research has revealed that families provide the same or increased levels of care for their child when they are in hospital and their costs often increase (eg transport and parking costs, childcare for siblings, meals in hospital). The Children's Trust is backing a family's legal challenge against the Government over the removal of Disability Living Allowance (DLA) when their disabled son spent more than 84 days in hospital. In October 2013 the Mathieson family from Warrington were granted permission to take their case to the Court of Appeal. Cameron Mathieson had very complex health needs and sadly passed away in October 2012 at the age of 5, having spent more than half of his life in Alder Hey hospital. Cameron's family are challenging the Disability Living Allowance '84-day rule', whereby DLA is suspended for under-16s when they spend more than 84 days in hospital, so that no other family with a disabled child who spends long periods in hospital will have essential benefits taken away from them. An estimated 500 families are affected by the rule each year. The Mathiesons have been backed by The Children's Trust and another national charity, Contact a Family, who have today jointly published new research to help highlight the issue. Stop the DLA Takeaway Report In correspondence with the charities, the Government has argued that the suspension of DLA payments is justified when a child spends longer than 84 days in hospital because they say a patient's needs will be fully met free of charge by the NHS. But The Children's Trust and Contact a Family's survey of 104 families with disabled children who spend long periods in hospital shows the Government's rationale is flawed:
- 99% of those responding to the survey reported that they provide more or the same level of care when their child is in hospital, compared to when their child is at home
- 93% said that their costs relating to their child's disability increased when their child is in hospital
- Both charities are calling for the '84-day rule' to be abolished and have written to the Government with this new evidence.
- The Mathieson family's legal challenge has been ongoing since November 2010. The case then went to the First Tier Tribunal in December 2011 and the Upper Tier Tribunal in January 2013. On Wednesday 16th October 2013 at an oral hearing the family were given permission to take their case to the Court of Appeal, with the case expecting to be heard within the next six months. Cameron sadly passed away in October 2012 at the age of 5.
- 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.
- A related rule that The Children's Trust and Contact a Family 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.
- 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 x 400 or 500 gives total cost as £2.7 million to £3.4 million.
- 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.
- Families who completed the survey described their caring duties while in hospital to include personal care such as feeding, changing nappies and pads, bathing, dressing and taking their child to the toilet sometimes using hoists and turning their child every few hours because they are unable to change position in bed. In addition they were there to communicate for their child with hospital staff and provide an 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 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.