Update On Family’s Legal Challenge To DLA 84 Day Rule

I’ve just seen this update on this case at The Children’s Trust website.

A family whose disabled son’s disability living allowance (DLA) was taken away because he was in hospital for more than 84 days will take their legal challenge against the secretary of state for work and pensions to the court of appeal later this week (week commencing 3rd February 2014).

Cameron Mathieson spent more than two years in hospital with cystic fibrosis and muscular dystrophy. His family, who are being backed by both The Children’s Trust and Contact a Family, argue that they acted as full time carers until the five-year-old’s death, in October 2012.

They are mounting the challenge in their son’s name so that no other family with a disabled child who spends long periods in hospital has essential financial support taken away from them.

Government guidelines state that DLA is not payable after the first 84 days in hospital. Research from The Children’s Trust and Contact a Family shows that this rule denies families with disabled children financial help when they need it most.

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.

“Cameron had a unique combination of conditions and was the only 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, 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.

“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.”

Government’s rationale is flawed
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 our survey of 104 families with disabled children who spend long periods in hospital shows this rationale is flawed with:

• 99% of those responding saying 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% saying that their costs relating to their child’s disability increase when their child is in hospital.

Both charities are calling for the ’84-day rule’ to be abolished. 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 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.

Costs and care increase
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.”

Paul Soames, 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.”

The judge’s decision on the Mathieson’s challenge is not likely to made for a few weeks, when we will be able to give a further update.