Family taking case to Court of Appeal against Government rule that stopped severely disabled son’s benefit when in hospital

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Family taking case to Court of Appeal against Government rule that stopped severely disabled son’s benefit when in hospital.

Family backed by charities The Children’s Trust and Contact a Family, whose new research published today shows Disability Living Allowance rule denies financial help to disabled children when they need it most.

A judge has this week (16th October) given a family permission to take their legal challenge against the Secretary of State for Work and Pensions to the Court of Appeal over the removal of Disability Living Allowance (DLA) when their disabled son spent more than 84 days in hospital.

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.

The Mathieson family from Warrington are challenging the DLA ‘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 national charities The Children’s Trust and Contact a Family, who have today published new research to help highlight the issue.

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. 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, says: “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.”

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