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.
Watch the BBC's report about the Mathieson family's legal challenge The impact on families Their report highlights that most of the children affected by this rule are likely to have severe disabilities and/or complex health needs. Most will need round the clock care, which hospitals struggle to provide without the help of parents. Families who completed the survey described their wide ranging caring responsibilities while in hospital, including feeding, changing nappies and pads, bathing, providing education, stimulation and reassurance, and in some cases providing more complex care such as monitoring oxygen levels, changing nasogastric tubes and administering feeds and medications. They often stay with their child 24/7, sleeping by their hospital bedside. Families also described the substantial extra costs associated with their child's disability that they incur when in hospital, including transport and car parking costs, childcare costs for their other children and buying food from expensive hospital canteens, in addition to lost earnings because they are unable to work. Craig Mathieson, Cameron's father, said: "We are very encouraged by the decision to allow our case to be heard by the Court of Appeal. We are determined to overturn this grossly unfair rule in our son Cameron's name to stop more families having to go through what we have had to endure, even though it will make no financial difference to us in the future. 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. Cameron had a unique combination of conditions and was the only such patient in the world with both cystic fibrosis and Duchenne's muscular dystrophy in the genetic combination he had. While he 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, keeping him happy, bringing his brothers and sister to see him and play with him, giving medicines and far more than the hourly checks that he would have received on such a busy ward. Abdicating Cameron's care to hospital staff during this time was simply not an option because they had made it clear to us how much they depended upon our input, yet after 84 days his Disability Living Allowance was suspended, along with Carer's Allowance and our National Insurance contributions, heaping unbearable financial and emotional pressure on us as a family." Dalton Leong, Chief Executive of The Children's Trust, says: "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. Suspending a child's DLA also leads to the parents losing their Carer's Allowance and in some cases other benefits. This can prove financially devastating for families with severely disabled children who are often in and out of hospital. We urge the Government to stand by its commitment to protect the most vulnerable people in our society by abolishing this rule at the earliest opportunity while it is reforming the benefits system for under-16s." Srabani Sen, Chief Executive of Contact a Family, says: "Before our survey no one had ever asked families whether their costs and care levels increase or decrease when their child is in hospital. The DLA rule was introduced just over 20 years ago and now children with such complex needs have a much greater chance of survival. "Our survey shows that without a parents' input, a child's needs are not fully met in hospital. Most of the children this rule affects are severely disabled and need round the clock care that even the most well-equipped hospital cannot provide. Many of the children can't communicate, are seriously unwell and are facing painful treatment. Clearly parents do not leave their children at the door of the hospital and go home to carry on with life as normal. In reality, most are providing the same or more care and their costs increase." Notes
  • 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.
Stop the DLA Takeaway Report  If you are interested in campaigning with us please contact 

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